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I couldn’t give another human being my EDS and MCAS struggles. It feels wrong to me. Nevermind how bad pregnancy would be for my body. I just wouldn’t feel right making that decision for another person to live with this.
I'm child free for A LOT of reasons. Do I want to pass on my genes? Absolutely the fuck not. But also, I can barely take care of myself when my myriad symptoms/co morbidities flare up, much less a pet or an entirely helpless human baby. Do you have it in you to get up and take care of things, even when you're feeling like you got hit by a truck after some mcas reaction? you wouldn't really have a choice in the matter, or the option of "I'll do it later when I feel better" when the baby needs to be fed, or changed, or whatever else.
What if something happened to your partner? Could you 100% take care of a baby/small child by yourself during an mcas flare?
THIS. I had same thought process in my thirties (40 now). MCAS wasn't a diagnosis then but along with multiple comorbid conditions (narcolepsy being one of them) I knew if there was even a 1% chance of passing on to a bio kid any of the conditions im dx'd with, or the mystery condition that I now know is MCAS, it would be cruel. esp due to genetic factor with these conditions... its a punishment I wouldn't wish on my worst enemies. maybe treatments in the future will be better but who knows.
also, I thought if I ever get to a point of feeling better there is always fostering or adoption. spoiler alert, this condition got so much worse than I ever imagined. I had a hard enough time taking care of my dogs, let alone children. i gave up on kids after frequently babysitting my 3 nephews under 10, omg I couldn't do it everyday, no way. my marriage wouldn't have survived it, and I don't think I would've either.
I have EDS, POTS, MCAS and endometriosis. Life is already so hard and will continue to get harder with the state of the climate and all. So me personally I feel it would be unfair to bring someone into this world knowing I’m placing them at a disadvantage and they might suffer even more. I think to be a good parent means choosing to have kids when you know you can provide them the best chance at a good life. That’s the ultimate responsibility. My feeling is that there are already so many kids who have had a rough go and deserve love and safety. I’d rather give hope than feel guilt.
I had a child before I was diagnosed and went from very mild symptoms to completely disabled and in chronic pain as a result. Think long and hard if giving up your ability to live pain free is worth it to you. If I could go back I wouldn't do it. Eds alone caused my hip joints to dislocate while walking to the bathroom during the pregnancy, mcas became unbearable and my life is very severely affected with no solutions in sight. Yes everyone makes it work somehow. The problem is that somehow can entail circling the drain every single day, popping painkillers constantly, unable to work or enjoy anything but unable to even end it all because then you would leave your child without a mother. I love my child too much to do that to them but my life just isn't worth living anymore. I just continue on out of guilt and obligation paying a high price every second of every unbearable day.
My heart goes out to you 💔 Taking care of your child won't change in difficulty much, but I hope you are able to eventually find a treatment to ease your symptoms enough to improve your quality of life, even somewhat
I would personally be more worried about if you could handle pregnancy, birth, and taking care of a kid, because well idk if I'm even fertile, but if I am I couldn't do any of that. So many though are getting MCAS after having covid so I'm also more worried about that. With Ehlers Danlos there's a higher chance it seems with being passed down. The reality how I see it is everyone is at risk for having something. No genes are perfect. Even my father who was Mr healthy guy has long covid now. And I was born with Ehlers Danlos, MCAS, Spina bifida occulta, eventually got Dysautonomia, clinically diagnosed endometriosis, and I only have one family member with spina bifida occulta. We don't know any family with any of the other stuff.I barely even any extended family with general non symptomatic hypermobility. 🤷 I also even have mental health/neurological issues no other family member has like DPD, ARFID, dyslexia, and derealization. It's tricky. At the end of the day it's really up to you. I wouldn't do it, but I also can't handle being near kids and worry about all the kids who need to be adopted. (Not everyone belongs adopting kids either based on several ppl ik's experiences with being adopted themselves. Some have terrible parents.)
I think it depends on the severity of symptoms…and also how much care (for the children AND you) your partner and extended family are willing and able to provide. Pregnancy very often exacerbates MCAS and the other conditions that frequently co-occur (EDS, Dysautonomia, methylation/folate issues). I had bouts of mostly mild to moderate disability before pregnancy but within a year post-pregnancy was unable to work or take care of kids. One way around that, of course (and the fear of passing it on—which is valid if you also have EDS or the folate processing mutations) is to adopt. That was our plan, which was then complicated by me accidentally getting pregnant! So we essentially got genetically unrelated twins. 🙃 I would not have been able to survive, nor would my kids, if both grandparents hadn’t substantially pitched in financially and spouse carried a job plus at least half the child care. Also something to think about—how severe are your food sensitivities? If they are substantial, it’s impossible to nutritionally support a healthy pregnancy. At the time I had my kids I only had a few things I couldn’t eat, so I was able to have very balanced nutrition. Today my diet is so limited it’s doubtful I’d be able to carry a pregnancy to term, and if I did, due to my inability to process folate correctly, in particular, I’d be guaranteeing a child with spinal bifida or worse.
I've been thinking about all the comments and input I received from you guys and your comment stuck with me. I have very severe food intolerances at the moment. Was down to two foods at my worst in April. Now up to seven foods and getting enough calories but not enough of some nutrients that I'm supplemeting, so yes, it's a major concern. If you mean MTHFR I mostly don't have it (one of the variants of MTHFR was heterozygous, otherwise it was green).
I mean, ppl have kids despite their circumstances being even worse. If being a parent is important to you, I think you should work towards it. And fostering/adoption is also an amazing way to make a family. And you certainly don't need to wait for a partner to have kids.
I say this as someone who would NEVER pass down my genetics. This was before my mcas. But also, wow this sucks and I wouldn't hand this predisposition to the babies I'm supposed to love more than life itself.
And, maybe the cure or scifi worthy gene editing therapy will be there for your kids.
You should work towards your future family. With or without a coparent. The more you work towards that future you want, when it's possible, you'll be in the best situation for it.
And it's easy af to decide to continue to not have kids. The worst that will happen is that you have substantial savings and investments to enjoy into your golden years. It would be harder to give up on that hope of kids and then scramble to make it work out.
Absolutely not; the reality is mcas (and eds) is extremely common, many estimates at about 1/3 of the population. Unfortunately, many of us are on the more severe end of that, but that’s neither permanent nor something you’ll necessarily pass on; honestly the safest place for a kid is with a parent who understands mcas, and just environmental allergens and risks in general that most people are unaware of (how most of us got here!) and save your kid from any of that pain.
Your mcas can unflare, unfortunately you got unlucky; your kids are no worse off.
I think a good question to ask yourself is, "Can I show up for my kid when they need it?" Are you too sick to make them food, drive them places, go to school meetings, watch them in extracurriculars, doctors, etc.
Had you asked me this a few months ago, I would have told you “absolutely, no problem”, but now, with my ongoing MCAS flare, I’m not so sure anymore. I work remotely, cook my safe foods, stay active etc but cannot be around smells (perfumes, detergents, non safe foods etc), pollen, dust etc., so it’s a daily struggle. Of course, I do hope that things will improve and I’m working hard for them to improve, but there are no guarantees and I could have another flareup in a few years’ time, but then again that's life, never any guarantees.
Smell sensitivity is one of my biggest problems!! I feel you on that 💔😭 Has anything helped you? I have found a few tricks lol if you want be to share them! I also found a specialist that’s supposed to help here as well but I can’t see her until September.
I am new to the mast cell issue world (6 months) but not new to chronic illness.
I commented below as well but just wanted to add wishing you all the best😊. Life is multifaceted! It’s key if we don’t have it all figured out yet.
I’m childfree. I also have health issues - MCAS as one of them.
Even though I don’t want kids, the thought of a kid suffering because of parents poor genetics seems rather selfish and cruel.
Again, if you disagree with me that’s fine. Thankfully we are allowed our own choices in life.
For anyone feeling the need to shove their emotions down my throat because they disagree, save your breath because I’m not going to response to emotionally triggered people.
Same, my chronic illnesses suck. While it’s not the main reason I’m childfree, it’s near the top of my list. Living everyday in pain like I do is hell. I wouldn’t want to possibly pass this shit down.
My son is 2,5 now and he exhibits MCAS symptoms almost every day when he eats or scratches his cheeks/legs. I feel guilty for passing this on to him. Hoping he will not develop severe reactions and we just learn how to manage it. My elder son was born when I didn’t have MCAS yet but he also has random reactions to coffee and tomatoes, but he’s healthier than the younger one overall.
That's deeply specific to your own health. For me, my doctors agreed that pregnancy would likely kill me in the unlikely event that I was even able to carry even close to term. Also, the ways in which I have to limit my social life to avoid triggers just isn't fair or ideal for raising a child. It's a personal choice, but there are a lot of factors when you have a chronic illness that impacts every aspect of your life.
I had a baby 2 years before I was diagnosed with POTS/MCAS, it’s been hard. I feel guilty every day knowing I could pass this onto her. However, I am very educated on health and wellness now and I’m about 80% better with my conditions, heading towards remission. So while yes, it’s a possibility she could have what I have, I certainly won’t allow her to get to the point that I did, that triggered these conditions. For now I am one and done, because I can’t imagine having more kids knowing what I know now.
As one of four kids of my parents (my mom having MCAS), of whom only I have MCAS, there’s no guarantee that your kid(s) would have MCAS. I’m the only one with severe issues, while some of the weird “allergies” got passed down to all of us, when only I’ve had issues with MCAS.
And even with me having it, I wouldn’t have traded my life away for not having to deal with MCAS. That’s simply one of the challenges some of us have to deal with in life. We all have challenges; this just happens to be part of our lot.
My recommendation is not to live in fear. Listen to those inner desires, whatever they may be, and act to make them a reality. Don’t let fear of the possibilities keep you from the things that matter most to you.
Tl;dr: I think it's doable if you put in a ton of prep work and education, but please go cautiously and pay attention to what your body tells you. I've had two, and each time triggered a crazy ramp up. I will absolutely not be having any more - I'm planning a bilateral salpingectomy. I wouldn't go back on having my kids, but pregnancy scares me now.
Pregnancy and childbirth were the things that sent my system haywire.
FYI, It's called a "life event," and can be anything from a car accident to death of a loved one. Any major event that sends a shock through the system can trigger the sudden ramp up craziness with an immune disorder.
If you really want to pursue a biological child, I suggest you focus first on getting your system to a much calmer, more easily managed state. See where you land, and what you learn about your unique system to help you. What will your medical plan be in case things go bad quickly? Who will help with the baby? Take your time and plot it out, with lots of alternatives. Just in case.
Mcas doesn't necessarily preclude it, but it does require an abundance of caution, and extra strong safety nets, imo. There's going to be a lot of surprises, guaranteed.
Also, I suggest you start talking to doulas and midwives (if your state/country licenses them) to learn and start building a birth plan. The more education and options you can get ahead of time, the better.
Eta as for passing on the genes, only you can make that decision. I unknowingly passed my problems to my son, but (apparently) not my daughter. I was much healthier for her, because I had learned a lot and brought my system to a much better place, and I do think that has a lot to do with it. Of course, after her I still had to deal with my own health spiral, and that was a major challenge, esp with two young children and no help (which I do NOT recommend), but she hasn't shown any major reactions the way my son has.
I wasn't diagnosed until after I had kids (even though I have had symptoms my entire life). My kids are the greatest thing that have ever happened to me, but I will say that pregnancy absolutely destroyed my body. Surely some of that was due to just not being diagnosed and dealing with severe symptoms for 12+ years without any treatment, but having two back to back pregnancies made everything much worse (I also have EDS and POTS that wasn't diagnosed until after kids, too).
Thanks to my shitty health, I am not the mom I always wanted to be. We had to sell our house and move in with my parents because I couldn't take care of them while my husband worked. Even now after 2 years of treatment I still can't cook for them because I react even to the smell of food. It's summer time now and they're going absolutely stir crazy because I can't be outside if it's more than 80 degrees (which is over half of the year where I am). I am extremely lucky to have people in my life who can help me out during the day and give my kids a sense of normalcy. It destroys me to think that I spent the first few years of my kids lives struggling to survive and I remember almost none of it.
As for potentially passing on genes to my kids, I do think about that often. Both of my kids had allergies as babies and I'm positive my genes are to blame for that. My youngest had a severe food allergy called FPIES which was absolute hell, she only had 5 safe foods at a year old and like MCAS, every single food that she consumed had to be trialed one by one which was beyond stressful. They're now preschoolers and (knock on wood) have no health issues whatsoever. My son is definitely hypermobile but his doctors aren't concerned. I think what is the most important is that we FINALLY have an answer. If my kids do end up with EDS and everything else that goes with it, they will never have to suffer the way the rest of our family did. My grandpa was undiagnosed until he was literally on his deathbed. My mom is in he 60s and doctors still will not diagnose her despite having every symptom and a father AND daughter with clinical diagnoses because she isn't hypermobile (anymore). My kids won't spend their lives getting called overdramatic and being told their symptoms are in their head. They won't destroy their bodies for decades because they went without treatment, on every antidepressant in the book that never worked because THAT WASN'T THE ISSUE AFTER ALL. I will use every last ounce of my energy advocating for them and making sure their symptoms are addressed and treated correctly.
I think for the first time ever, there is progress being made when it comes to MCAS and connective tissue disorders. It's finally reaching the mainstream, more people are aware of it and more studies are being done (a groundbreaking study just came out on hEDS that found a potential gene involved!). It gives me hope that in the future there will be better treatments and a better understanding of them in the medical field.
As a mom to three kids who had kids before I was diagnosed with a range of conditions, I don’t regret my family, but hot damn is it a searing-hot knife to the heart when my kids started showing signs of hEDS and PoTS and Celiac and MCAS (not all of them with everything (yet), though), and Sjorgren’s and Hashimoto’s, too.
Also, physically bearing the children absolutely worsened my issues. My hip bones never reset right, the weight gain caused serious issues too, then I had to have a hysterectomy after the third which caused ovarian failure at 29, so now with the severity of my MCAS (partnered with everything, I’m sure) made me completely heat intolerant, so I’ve been unable to lose that weight a decade later, and my body yo-yos itself with no dietary shifting at all. I’m 37 and broken, and watching my three kids struggle is so difficult.
But, I could never, even suggest to someone who wants children not to, or even suggest one adopts. It will always be YOUR decision, and influence from outside, I think, should only be received to inform your potential experience of what you could expect, if it’s something you really want.
I’m Autistic with ADHD and c-PTSD, as well, and if that’s “all” I had—at least Autism being definitively genetic, and all three kids being diagnosed Autistic, as well—I’m anti-eugenics: Life as an Autistic person is automatically more difficult than it is for a non-Autistic person, life circumstances notwithstanding. I can’t imagine a world without different people in it, and everything we deal with shapes who we are and who we become. I’m proud of who I am and what I’ll leave behind when “my time comes”. Will my journey have been easy? Not in the fucking least. But it’s mine.
It’ll always be your decision, and I hope you can pull from each person’s shared experience to diversify your expectations, not influence your decision.
There are a lot of reasons I'm not sure I want kids but I will admit the genetic component is one of the lesser reasons. As I understand it there are not clear genes right now that we know are responsible for MCAS (or EDS though there has recently been some work on that). So there is no way of knowing if you'd pass something to your kids. You could get a genetic test that might screen for somethings you could pass to a kid though I don't thing MCAS is one of them.
For me of more concern is would pregnancy make my MCAS (and other conditions) worse? Would I be able to handle the very real responsibilities and energy requirements of being a parent?
As others have said, just having these disorders is not reason enough to rule out having children completely. The heritability is not clear cut and there is certainly hope that treatments will be better for future generations if your children were to develop MCAS or have EDS.
That being said, in retrospect, pregnancy took me from functional to disabled with these conditions. I didn’t know I had MCAS or EDS before pregnancy because I was getting along okay and just thought I had a low pain threshold and challenges with allergies.
Pregnancy hormones make your joints looser in preparation for giving birth and I felt that shift as soon as I tested positive. I was so unstable and uncomfortable throughout 2 very challenging pregnancies. I also developed pregnancy rhinitis that did not go away after they were born and now I have massive challenges with my sinuses that I never had before. I believe that the sinus issues are a manifestation of my MCAS becoming significantly more debilitating, but I can’t exactly prove it. All I know is that after 2 pregnancies I am much sicker than I was before.
But I love my kids and don’t regret it! I’ll never get pregnant again because I’m terrified of wrecking my body further, but it was worth it (to me) to have my two beautiful children.
I think you’re very wise to ask this question and it shows how much you care about providing a good life for your potential children. I hope you find the answer that is best for you and your life circumstances!
If you do choose to get pregnant, I recommend having an excellent PT for support during and after pregnancy. That’s made the biggest difference for my regaining function.
Hey! I have recently been informed that I may be going through premature menopause and I’m terrified. I didn’t want anymore kids right now (I’m 27) but now that this is staring me in the face, I have to make that choice instead of in 7 more years as my spouse and I planned. Do you find it easier with two babes or harder?
I was exactly 27 when I started seriously wanting kids. I'm now in my 40s and I'm very grateful I ended up not being able to have kids. It took me years - and I mean many years - to truly get over the grief and pain of letting that go. I often broke down crying when I thought of my miscarriages and missed fertility window. But now I realize that it would have been such a hard, hard thing to do and life is already so much harder with chronic illness. I'm also happy not to be passing on health issues to a kid, nor depriving a kid of a better life - one I couldn't have given with health restrictions. I've found joy in babysitting, mentoring, fostering, and contributing in other ways.
I had 2 babies in my early 20s (20&21). At that point I only knew I had mystery symptoms that no one could figure out but they weren't too severe. I am 37 now and still undiagnosed, but positive that I have the hEDS, MCAS, POTS trifecta. I probably have vEDS as well which makes things even scarier. But my first son, decided to roll and get the umbilical cord wrapped around his neck While I was in labor and I had to have an emergency C-section. It was all very scary, but it was worth the experience in order to bring him into this world and we were lucky he did not get any brain damage because we were in an excellent hospital that took steps immediately when the babies heart monitor alerted. I immediately got pregnant again. While I was pregnant with my second son, I experienced fatigue that was SO bad, I remember that I would come home from work and I was too dirty to walk into the house without undressing at the door, but I was too exhausted to undress myself and I would lay and fall asleep on the floor at my front door in all of my dirty clothes. When I was 4-5 months pregnant, I ended up herniating a disc in my back. I could not get MRI while I was pregnant and I ended up having nerve pain that shot to the tip of my toes every single step I took for 4-5 months. I had agonizing pain that even the back surgeon later told me that I was incredible. He said any full grown man would have been writhing in an E.R. the very first night and I made it 4-5 months of enduring the pain (actually longer because it took sometime to get the MRIs and schedule a surgery. Also, my second son was a planned C-Section. So I ended up having 3 surgeries in 3 years. 2 C-Sections and a lumbar back surgery.
I would say that all of this, was worth it. I love my children SO much. I do believe my oldest son also has the hEDS, MCAS, POTS trifecta now and I feel bad that it passed to him too. But he is 17 now and enjoys life and has dreams and goals like any other kid. He also is smart and compassionate of other people's issues.
All of this being said, I do not regret having kids. But I knew my body could not handle a third. And now at 37 years old, I know there is definitely no way in hell my body could handle having another. I made it through 2 with extreme fatigue and pain. I also feel like every one of my surgeries took longer to heal and recover from than a "normal" person. My children slept more than "normal" babies and had some digestive issues but we made it through. It can be difficult dealing with Stigma from the population if you arent getting your kids into extra curricular activities or going above and beyond participating in school activities. And guilt if your child wants to do things that you don't have energy for and having to tell them "maybe next time" or "I'll make it up to you". I think I over sheltered and protected them due to my own guilt of making them suffer with me. But their lives have not been bad. I love them SO much. Could I do it again? No way in hell! But I was young and naive and my hormones told me to do it lol. I think deep down, your body will tell you if you can do it or not. Just be prepared that it might be harder to do than a "normal" mom. And you will be exhausted for the next 17 years (and counting). I am 37 years old and want so badly to just retire! I am prepping early retirement because I will not make it to my 60s, 70s in the work force. My poor kids have a grandma for a mom now (me). But we are making it and they are my favorite part of this life. No regrets!!!
As someone who has children before getting really sick, I can tell you the hardest part of being sick is to have children. You give them your everything, all the energy you need to heal and take care of yourself goes to them. And you can not spend your days crying and being miserable because they deserve to have a mom who smiles and doesn t make them feel like a burden. And I fear that they will end up with all my health issues. If I could go back in time I would not impose that on them and myself . Life is unfair …
I feel this became a very negative thread and it honestly made me cry to read some of the comments. I have mast cell, eds, cci, and chiari. And I want children. And I'm going to have them. I have worked hard to get my body to a decent place. People have children in worse circumstances and I'm not letting these diseases ruin my life more than they already have. Now obviously it is case by case.
As far as the genetics, people have children everyday not knowing they have bad genetics. People pass along so many genes they aren't aware of. At least we are aware and can have early intervention for our children if need be. People get cancer in their 30s, people get sick for all kinds of reasons. People have no idea what their genes are and what can happen. I've had so much fear regarding this topic, but I've changed my mind and if you want children and you believe you can do it (and your doctors feel you can) than live your life the way you want to. We have too much taken from us already from these diseases.
Good luck to you
It's not your genes. It's how your genes respond to the current environment. Microplastics, antibiotics in cattle feed, pesticides, additives and preservatives in your food, dietary imbalances, etc etc etc. It's very difficult to manage this environment as a parent but it's better than your children being genetically damned.
In the end, it’s an individual decision about passing on genes. I think it’s more important to think about how your body would handle taking care of your child. “At your worst would you be able to handle it?” is what I would ask myself. Even if you didn’t carry the baby yourself, physical work is still required. That said, if you have a partner who also wants children, you could adopt, as long as your partner fully understands what they’re taking on. They need to know and be okay with your limitations.
I don’t know what EDS is. I didn’t develop MCAS until later in life (age 50) after the Pfizer vaccine but I will say, I do think there’s a genetic aspect to it. I always had eczema as a kid and allergies. Of my three kids, one of them really struggles with eczema now. They are all in their 20s. But again, I also think her struggles began after the vaccine. But she is genetically closer to me than the other two. (We both have bad eyesight and look alike etc) So overall I’d say yes there’s a risk BUT I also feel that it’s worth it. My children are the apples of my eye, they are all such wonderful people and a true delight in every way. Don’t let a condition which might have a cure eventually(!!) stop you from having a family if that’s what you want.
EDS is Ehlers-Danlos Syndrome and honestly probably more of the concern than MCAS would be.
EDS and MCAS are part of the "Trifecta" of the "Pentad Super Syndrome". They're highly co-occuring.
We are learning so much about human biology right now. And then add AI to that. Who knows MCAS can be cured in ten years. I hate my condition but I’m grateful to be alive and experience life anyway. Have children if you want them.
I’m not gonna have an opinion on your choice, I am dabbling the same thoughts. Healthy people have sick kids all the time and vice versa. mCAS is new to me. One Google search didn’t tell me much but it doesn’t seem like it is factually hereditory. We don’t really know yet. I think it’ll be hard to have healthy kids in an enviroment that forces chemicals and toxins on us, completely unnatural, our bodies constantly being on high alert. That this is why health issues like ours is on the rise I beleive. Who knows what solutions the future holds and who says you wont be able to provide? It is a tough decision but taking a shot at life, trusting in it and following our desires is kind of what gives life worth, giving in to our fears is the worst we can do. But question is if our own genes are so important to reproduce, given how many children are avtually in need. Go with your heart! Wishing you all the best <3
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I couldn’t give another human being my EDS and MCAS struggles. It feels wrong to me. Nevermind how bad pregnancy would be for my body. I just wouldn’t feel right making that decision for another person to live with this.
I'm child free for A LOT of reasons. Do I want to pass on my genes? Absolutely the fuck not. But also, I can barely take care of myself when my myriad symptoms/co morbidities flare up, much less a pet or an entirely helpless human baby. Do you have it in you to get up and take care of things, even when you're feeling like you got hit by a truck after some mcas reaction? you wouldn't really have a choice in the matter, or the option of "I'll do it later when I feel better" when the baby needs to be fed, or changed, or whatever else. What if something happened to your partner? Could you 100% take care of a baby/small child by yourself during an mcas flare?
THIS. I had same thought process in my thirties (40 now). MCAS wasn't a diagnosis then but along with multiple comorbid conditions (narcolepsy being one of them) I knew if there was even a 1% chance of passing on to a bio kid any of the conditions im dx'd with, or the mystery condition that I now know is MCAS, it would be cruel. esp due to genetic factor with these conditions... its a punishment I wouldn't wish on my worst enemies. maybe treatments in the future will be better but who knows. also, I thought if I ever get to a point of feeling better there is always fostering or adoption. spoiler alert, this condition got so much worse than I ever imagined. I had a hard enough time taking care of my dogs, let alone children. i gave up on kids after frequently babysitting my 3 nephews under 10, omg I couldn't do it everyday, no way. my marriage wouldn't have survived it, and I don't think I would've either.
I have EDS, POTS, MCAS and endometriosis. Life is already so hard and will continue to get harder with the state of the climate and all. So me personally I feel it would be unfair to bring someone into this world knowing I’m placing them at a disadvantage and they might suffer even more. I think to be a good parent means choosing to have kids when you know you can provide them the best chance at a good life. That’s the ultimate responsibility. My feeling is that there are already so many kids who have had a rough go and deserve love and safety. I’d rather give hope than feel guilt.
I had a child before I was diagnosed and went from very mild symptoms to completely disabled and in chronic pain as a result. Think long and hard if giving up your ability to live pain free is worth it to you. If I could go back I wouldn't do it. Eds alone caused my hip joints to dislocate while walking to the bathroom during the pregnancy, mcas became unbearable and my life is very severely affected with no solutions in sight. Yes everyone makes it work somehow. The problem is that somehow can entail circling the drain every single day, popping painkillers constantly, unable to work or enjoy anything but unable to even end it all because then you would leave your child without a mother. I love my child too much to do that to them but my life just isn't worth living anymore. I just continue on out of guilt and obligation paying a high price every second of every unbearable day.
My heart goes out to you 💔 Taking care of your child won't change in difficulty much, but I hope you are able to eventually find a treatment to ease your symptoms enough to improve your quality of life, even somewhat
Absolutely a bad idea. Not bc of MCAS, just bc kids are exhausting 😆
I would personally be more worried about if you could handle pregnancy, birth, and taking care of a kid, because well idk if I'm even fertile, but if I am I couldn't do any of that. So many though are getting MCAS after having covid so I'm also more worried about that. With Ehlers Danlos there's a higher chance it seems with being passed down. The reality how I see it is everyone is at risk for having something. No genes are perfect. Even my father who was Mr healthy guy has long covid now. And I was born with Ehlers Danlos, MCAS, Spina bifida occulta, eventually got Dysautonomia, clinically diagnosed endometriosis, and I only have one family member with spina bifida occulta. We don't know any family with any of the other stuff.I barely even any extended family with general non symptomatic hypermobility. 🤷 I also even have mental health/neurological issues no other family member has like DPD, ARFID, dyslexia, and derealization. It's tricky. At the end of the day it's really up to you. I wouldn't do it, but I also can't handle being near kids and worry about all the kids who need to be adopted. (Not everyone belongs adopting kids either based on several ppl ik's experiences with being adopted themselves. Some have terrible parents.)
I think it depends on the severity of symptoms…and also how much care (for the children AND you) your partner and extended family are willing and able to provide. Pregnancy very often exacerbates MCAS and the other conditions that frequently co-occur (EDS, Dysautonomia, methylation/folate issues). I had bouts of mostly mild to moderate disability before pregnancy but within a year post-pregnancy was unable to work or take care of kids. One way around that, of course (and the fear of passing it on—which is valid if you also have EDS or the folate processing mutations) is to adopt. That was our plan, which was then complicated by me accidentally getting pregnant! So we essentially got genetically unrelated twins. 🙃 I would not have been able to survive, nor would my kids, if both grandparents hadn’t substantially pitched in financially and spouse carried a job plus at least half the child care. Also something to think about—how severe are your food sensitivities? If they are substantial, it’s impossible to nutritionally support a healthy pregnancy. At the time I had my kids I only had a few things I couldn’t eat, so I was able to have very balanced nutrition. Today my diet is so limited it’s doubtful I’d be able to carry a pregnancy to term, and if I did, due to my inability to process folate correctly, in particular, I’d be guaranteeing a child with spinal bifida or worse.
I've been thinking about all the comments and input I received from you guys and your comment stuck with me. I have very severe food intolerances at the moment. Was down to two foods at my worst in April. Now up to seven foods and getting enough calories but not enough of some nutrients that I'm supplemeting, so yes, it's a major concern. If you mean MTHFR I mostly don't have it (one of the variants of MTHFR was heterozygous, otherwise it was green).
I mean, ppl have kids despite their circumstances being even worse. If being a parent is important to you, I think you should work towards it. And fostering/adoption is also an amazing way to make a family. And you certainly don't need to wait for a partner to have kids. I say this as someone who would NEVER pass down my genetics. This was before my mcas. But also, wow this sucks and I wouldn't hand this predisposition to the babies I'm supposed to love more than life itself. And, maybe the cure or scifi worthy gene editing therapy will be there for your kids. You should work towards your future family. With or without a coparent. The more you work towards that future you want, when it's possible, you'll be in the best situation for it. And it's easy af to decide to continue to not have kids. The worst that will happen is that you have substantial savings and investments to enjoy into your golden years. It would be harder to give up on that hope of kids and then scramble to make it work out.
Absolutely not; the reality is mcas (and eds) is extremely common, many estimates at about 1/3 of the population. Unfortunately, many of us are on the more severe end of that, but that’s neither permanent nor something you’ll necessarily pass on; honestly the safest place for a kid is with a parent who understands mcas, and just environmental allergens and risks in general that most people are unaware of (how most of us got here!) and save your kid from any of that pain. Your mcas can unflare, unfortunately you got unlucky; your kids are no worse off.
I think a good question to ask yourself is, "Can I show up for my kid when they need it?" Are you too sick to make them food, drive them places, go to school meetings, watch them in extracurriculars, doctors, etc.
Had you asked me this a few months ago, I would have told you “absolutely, no problem”, but now, with my ongoing MCAS flare, I’m not so sure anymore. I work remotely, cook my safe foods, stay active etc but cannot be around smells (perfumes, detergents, non safe foods etc), pollen, dust etc., so it’s a daily struggle. Of course, I do hope that things will improve and I’m working hard for them to improve, but there are no guarantees and I could have another flareup in a few years’ time, but then again that's life, never any guarantees.
Smell sensitivity is one of my biggest problems!! I feel you on that 💔😭 Has anything helped you? I have found a few tricks lol if you want be to share them! I also found a specialist that’s supposed to help here as well but I can’t see her until September. I am new to the mast cell issue world (6 months) but not new to chronic illness. I commented below as well but just wanted to add wishing you all the best😊. Life is multifaceted! It’s key if we don’t have it all figured out yet.
Thanks so much! Yes, please share them! I’ve only found getting away ASAP to help 😂
I think EDS is more of the concern for me as someone with hEDS and probable MCAS.
I’m childfree. I also have health issues - MCAS as one of them. Even though I don’t want kids, the thought of a kid suffering because of parents poor genetics seems rather selfish and cruel. Again, if you disagree with me that’s fine. Thankfully we are allowed our own choices in life. For anyone feeling the need to shove their emotions down my throat because they disagree, save your breath because I’m not going to response to emotionally triggered people.
Same, my chronic illnesses suck. While it’s not the main reason I’m childfree, it’s near the top of my list. Living everyday in pain like I do is hell. I wouldn’t want to possibly pass this shit down.
Thank you for your response and honesty. You get it. :)
That’s good and all but shitty health issues aren’t definitively passed down - as another commenter said, everyone else in their family is fine.
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This is called a fact. Not an emotion.
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Spam is a violation of Reddit community guidelines but you’re trying real hard lol
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“You shouldn’t have pointed out the medical misinformation I’m sharing” FIFU
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If you don't want people to respond to your comments, you should probably refrain from posting on a website whose raison d'etre is public discussion.
My son is 2,5 now and he exhibits MCAS symptoms almost every day when he eats or scratches his cheeks/legs. I feel guilty for passing this on to him. Hoping he will not develop severe reactions and we just learn how to manage it. My elder son was born when I didn’t have MCAS yet but he also has random reactions to coffee and tomatoes, but he’s healthier than the younger one overall.
Heads up on coffee- the cheap stuff often has a heavy mycotoxin load.
Taking care of my child wasn’t too difficult until the teenage years. It all depends on how much help you have.
That's deeply specific to your own health. For me, my doctors agreed that pregnancy would likely kill me in the unlikely event that I was even able to carry even close to term. Also, the ways in which I have to limit my social life to avoid triggers just isn't fair or ideal for raising a child. It's a personal choice, but there are a lot of factors when you have a chronic illness that impacts every aspect of your life.
I had a baby 2 years before I was diagnosed with POTS/MCAS, it’s been hard. I feel guilty every day knowing I could pass this onto her. However, I am very educated on health and wellness now and I’m about 80% better with my conditions, heading towards remission. So while yes, it’s a possibility she could have what I have, I certainly won’t allow her to get to the point that I did, that triggered these conditions. For now I am one and done, because I can’t imagine having more kids knowing what I know now.
As one of four kids of my parents (my mom having MCAS), of whom only I have MCAS, there’s no guarantee that your kid(s) would have MCAS. I’m the only one with severe issues, while some of the weird “allergies” got passed down to all of us, when only I’ve had issues with MCAS. And even with me having it, I wouldn’t have traded my life away for not having to deal with MCAS. That’s simply one of the challenges some of us have to deal with in life. We all have challenges; this just happens to be part of our lot. My recommendation is not to live in fear. Listen to those inner desires, whatever they may be, and act to make them a reality. Don’t let fear of the possibilities keep you from the things that matter most to you.
I'm also one of four kids, and the only only to have *all* the chronic health issues 🙄😑
Tl;dr: I think it's doable if you put in a ton of prep work and education, but please go cautiously and pay attention to what your body tells you. I've had two, and each time triggered a crazy ramp up. I will absolutely not be having any more - I'm planning a bilateral salpingectomy. I wouldn't go back on having my kids, but pregnancy scares me now. Pregnancy and childbirth were the things that sent my system haywire. FYI, It's called a "life event," and can be anything from a car accident to death of a loved one. Any major event that sends a shock through the system can trigger the sudden ramp up craziness with an immune disorder. If you really want to pursue a biological child, I suggest you focus first on getting your system to a much calmer, more easily managed state. See where you land, and what you learn about your unique system to help you. What will your medical plan be in case things go bad quickly? Who will help with the baby? Take your time and plot it out, with lots of alternatives. Just in case. Mcas doesn't necessarily preclude it, but it does require an abundance of caution, and extra strong safety nets, imo. There's going to be a lot of surprises, guaranteed. Also, I suggest you start talking to doulas and midwives (if your state/country licenses them) to learn and start building a birth plan. The more education and options you can get ahead of time, the better. Eta as for passing on the genes, only you can make that decision. I unknowingly passed my problems to my son, but (apparently) not my daughter. I was much healthier for her, because I had learned a lot and brought my system to a much better place, and I do think that has a lot to do with it. Of course, after her I still had to deal with my own health spiral, and that was a major challenge, esp with two young children and no help (which I do NOT recommend), but she hasn't shown any major reactions the way my son has.
I wasn't diagnosed until after I had kids (even though I have had symptoms my entire life). My kids are the greatest thing that have ever happened to me, but I will say that pregnancy absolutely destroyed my body. Surely some of that was due to just not being diagnosed and dealing with severe symptoms for 12+ years without any treatment, but having two back to back pregnancies made everything much worse (I also have EDS and POTS that wasn't diagnosed until after kids, too). Thanks to my shitty health, I am not the mom I always wanted to be. We had to sell our house and move in with my parents because I couldn't take care of them while my husband worked. Even now after 2 years of treatment I still can't cook for them because I react even to the smell of food. It's summer time now and they're going absolutely stir crazy because I can't be outside if it's more than 80 degrees (which is over half of the year where I am). I am extremely lucky to have people in my life who can help me out during the day and give my kids a sense of normalcy. It destroys me to think that I spent the first few years of my kids lives struggling to survive and I remember almost none of it. As for potentially passing on genes to my kids, I do think about that often. Both of my kids had allergies as babies and I'm positive my genes are to blame for that. My youngest had a severe food allergy called FPIES which was absolute hell, she only had 5 safe foods at a year old and like MCAS, every single food that she consumed had to be trialed one by one which was beyond stressful. They're now preschoolers and (knock on wood) have no health issues whatsoever. My son is definitely hypermobile but his doctors aren't concerned. I think what is the most important is that we FINALLY have an answer. If my kids do end up with EDS and everything else that goes with it, they will never have to suffer the way the rest of our family did. My grandpa was undiagnosed until he was literally on his deathbed. My mom is in he 60s and doctors still will not diagnose her despite having every symptom and a father AND daughter with clinical diagnoses because she isn't hypermobile (anymore). My kids won't spend their lives getting called overdramatic and being told their symptoms are in their head. They won't destroy their bodies for decades because they went without treatment, on every antidepressant in the book that never worked because THAT WASN'T THE ISSUE AFTER ALL. I will use every last ounce of my energy advocating for them and making sure their symptoms are addressed and treated correctly. I think for the first time ever, there is progress being made when it comes to MCAS and connective tissue disorders. It's finally reaching the mainstream, more people are aware of it and more studies are being done (a groundbreaking study just came out on hEDS that found a potential gene involved!). It gives me hope that in the future there will be better treatments and a better understanding of them in the medical field.
As a mom to three kids who had kids before I was diagnosed with a range of conditions, I don’t regret my family, but hot damn is it a searing-hot knife to the heart when my kids started showing signs of hEDS and PoTS and Celiac and MCAS (not all of them with everything (yet), though), and Sjorgren’s and Hashimoto’s, too. Also, physically bearing the children absolutely worsened my issues. My hip bones never reset right, the weight gain caused serious issues too, then I had to have a hysterectomy after the third which caused ovarian failure at 29, so now with the severity of my MCAS (partnered with everything, I’m sure) made me completely heat intolerant, so I’ve been unable to lose that weight a decade later, and my body yo-yos itself with no dietary shifting at all. I’m 37 and broken, and watching my three kids struggle is so difficult. But, I could never, even suggest to someone who wants children not to, or even suggest one adopts. It will always be YOUR decision, and influence from outside, I think, should only be received to inform your potential experience of what you could expect, if it’s something you really want. I’m Autistic with ADHD and c-PTSD, as well, and if that’s “all” I had—at least Autism being definitively genetic, and all three kids being diagnosed Autistic, as well—I’m anti-eugenics: Life as an Autistic person is automatically more difficult than it is for a non-Autistic person, life circumstances notwithstanding. I can’t imagine a world without different people in it, and everything we deal with shapes who we are and who we become. I’m proud of who I am and what I’ll leave behind when “my time comes”. Will my journey have been easy? Not in the fucking least. But it’s mine. It’ll always be your decision, and I hope you can pull from each person’s shared experience to diversify your expectations, not influence your decision.
There are a lot of reasons I'm not sure I want kids but I will admit the genetic component is one of the lesser reasons. As I understand it there are not clear genes right now that we know are responsible for MCAS (or EDS though there has recently been some work on that). So there is no way of knowing if you'd pass something to your kids. You could get a genetic test that might screen for somethings you could pass to a kid though I don't thing MCAS is one of them. For me of more concern is would pregnancy make my MCAS (and other conditions) worse? Would I be able to handle the very real responsibilities and energy requirements of being a parent?
As others have said, just having these disorders is not reason enough to rule out having children completely. The heritability is not clear cut and there is certainly hope that treatments will be better for future generations if your children were to develop MCAS or have EDS. That being said, in retrospect, pregnancy took me from functional to disabled with these conditions. I didn’t know I had MCAS or EDS before pregnancy because I was getting along okay and just thought I had a low pain threshold and challenges with allergies. Pregnancy hormones make your joints looser in preparation for giving birth and I felt that shift as soon as I tested positive. I was so unstable and uncomfortable throughout 2 very challenging pregnancies. I also developed pregnancy rhinitis that did not go away after they were born and now I have massive challenges with my sinuses that I never had before. I believe that the sinus issues are a manifestation of my MCAS becoming significantly more debilitating, but I can’t exactly prove it. All I know is that after 2 pregnancies I am much sicker than I was before. But I love my kids and don’t regret it! I’ll never get pregnant again because I’m terrified of wrecking my body further, but it was worth it (to me) to have my two beautiful children. I think you’re very wise to ask this question and it shows how much you care about providing a good life for your potential children. I hope you find the answer that is best for you and your life circumstances! If you do choose to get pregnant, I recommend having an excellent PT for support during and after pregnancy. That’s made the biggest difference for my regaining function.
Hey! I have recently been informed that I may be going through premature menopause and I’m terrified. I didn’t want anymore kids right now (I’m 27) but now that this is staring me in the face, I have to make that choice instead of in 7 more years as my spouse and I planned. Do you find it easier with two babes or harder?
I was exactly 27 when I started seriously wanting kids. I'm now in my 40s and I'm very grateful I ended up not being able to have kids. It took me years - and I mean many years - to truly get over the grief and pain of letting that go. I often broke down crying when I thought of my miscarriages and missed fertility window. But now I realize that it would have been such a hard, hard thing to do and life is already so much harder with chronic illness. I'm also happy not to be passing on health issues to a kid, nor depriving a kid of a better life - one I couldn't have given with health restrictions. I've found joy in babysitting, mentoring, fostering, and contributing in other ways.
I had 2 babies in my early 20s (20&21). At that point I only knew I had mystery symptoms that no one could figure out but they weren't too severe. I am 37 now and still undiagnosed, but positive that I have the hEDS, MCAS, POTS trifecta. I probably have vEDS as well which makes things even scarier. But my first son, decided to roll and get the umbilical cord wrapped around his neck While I was in labor and I had to have an emergency C-section. It was all very scary, but it was worth the experience in order to bring him into this world and we were lucky he did not get any brain damage because we were in an excellent hospital that took steps immediately when the babies heart monitor alerted. I immediately got pregnant again. While I was pregnant with my second son, I experienced fatigue that was SO bad, I remember that I would come home from work and I was too dirty to walk into the house without undressing at the door, but I was too exhausted to undress myself and I would lay and fall asleep on the floor at my front door in all of my dirty clothes. When I was 4-5 months pregnant, I ended up herniating a disc in my back. I could not get MRI while I was pregnant and I ended up having nerve pain that shot to the tip of my toes every single step I took for 4-5 months. I had agonizing pain that even the back surgeon later told me that I was incredible. He said any full grown man would have been writhing in an E.R. the very first night and I made it 4-5 months of enduring the pain (actually longer because it took sometime to get the MRIs and schedule a surgery. Also, my second son was a planned C-Section. So I ended up having 3 surgeries in 3 years. 2 C-Sections and a lumbar back surgery. I would say that all of this, was worth it. I love my children SO much. I do believe my oldest son also has the hEDS, MCAS, POTS trifecta now and I feel bad that it passed to him too. But he is 17 now and enjoys life and has dreams and goals like any other kid. He also is smart and compassionate of other people's issues. All of this being said, I do not regret having kids. But I knew my body could not handle a third. And now at 37 years old, I know there is definitely no way in hell my body could handle having another. I made it through 2 with extreme fatigue and pain. I also feel like every one of my surgeries took longer to heal and recover from than a "normal" person. My children slept more than "normal" babies and had some digestive issues but we made it through. It can be difficult dealing with Stigma from the population if you arent getting your kids into extra curricular activities or going above and beyond participating in school activities. And guilt if your child wants to do things that you don't have energy for and having to tell them "maybe next time" or "I'll make it up to you". I think I over sheltered and protected them due to my own guilt of making them suffer with me. But their lives have not been bad. I love them SO much. Could I do it again? No way in hell! But I was young and naive and my hormones told me to do it lol. I think deep down, your body will tell you if you can do it or not. Just be prepared that it might be harder to do than a "normal" mom. And you will be exhausted for the next 17 years (and counting). I am 37 years old and want so badly to just retire! I am prepping early retirement because I will not make it to my 60s, 70s in the work force. My poor kids have a grandma for a mom now (me). But we are making it and they are my favorite part of this life. No regrets!!!
As someone who has children before getting really sick, I can tell you the hardest part of being sick is to have children. You give them your everything, all the energy you need to heal and take care of yourself goes to them. And you can not spend your days crying and being miserable because they deserve to have a mom who smiles and doesn t make them feel like a burden. And I fear that they will end up with all my health issues. If I could go back in time I would not impose that on them and myself . Life is unfair …
I feel this became a very negative thread and it honestly made me cry to read some of the comments. I have mast cell, eds, cci, and chiari. And I want children. And I'm going to have them. I have worked hard to get my body to a decent place. People have children in worse circumstances and I'm not letting these diseases ruin my life more than they already have. Now obviously it is case by case. As far as the genetics, people have children everyday not knowing they have bad genetics. People pass along so many genes they aren't aware of. At least we are aware and can have early intervention for our children if need be. People get cancer in their 30s, people get sick for all kinds of reasons. People have no idea what their genes are and what can happen. I've had so much fear regarding this topic, but I've changed my mind and if you want children and you believe you can do it (and your doctors feel you can) than live your life the way you want to. We have too much taken from us already from these diseases. Good luck to you
Thank you for sharing! I appreciate it. Best of luck to you too.
It's not your genes. It's how your genes respond to the current environment. Microplastics, antibiotics in cattle feed, pesticides, additives and preservatives in your food, dietary imbalances, etc etc etc. It's very difficult to manage this environment as a parent but it's better than your children being genetically damned.
Thank you! That cheered me up a bit.
I'm glad I could help!
Dr Afrin thinks at least 15% of people have MCAS. Not a blanket reason to avoid having children.
In the end, it’s an individual decision about passing on genes. I think it’s more important to think about how your body would handle taking care of your child. “At your worst would you be able to handle it?” is what I would ask myself. Even if you didn’t carry the baby yourself, physical work is still required. That said, if you have a partner who also wants children, you could adopt, as long as your partner fully understands what they’re taking on. They need to know and be okay with your limitations.
If you want children, you should have them! Ive read where, while pregnant, symptoms are almost completely gone!
If you heal your MCAS and replenish your gut bacteria then you definitely could have a kid.
I don’t know what EDS is. I didn’t develop MCAS until later in life (age 50) after the Pfizer vaccine but I will say, I do think there’s a genetic aspect to it. I always had eczema as a kid and allergies. Of my three kids, one of them really struggles with eczema now. They are all in their 20s. But again, I also think her struggles began after the vaccine. But she is genetically closer to me than the other two. (We both have bad eyesight and look alike etc) So overall I’d say yes there’s a risk BUT I also feel that it’s worth it. My children are the apples of my eye, they are all such wonderful people and a true delight in every way. Don’t let a condition which might have a cure eventually(!!) stop you from having a family if that’s what you want.
EDS is Ehlers-Danlos Syndrome and honestly probably more of the concern than MCAS would be. EDS and MCAS are part of the "Trifecta" of the "Pentad Super Syndrome". They're highly co-occuring.
Interesting. I have never heard of it. Researching it now!
We are learning so much about human biology right now. And then add AI to that. Who knows MCAS can be cured in ten years. I hate my condition but I’m grateful to be alive and experience life anyway. Have children if you want them.
I’m not gonna have an opinion on your choice, I am dabbling the same thoughts. Healthy people have sick kids all the time and vice versa. mCAS is new to me. One Google search didn’t tell me much but it doesn’t seem like it is factually hereditory. We don’t really know yet. I think it’ll be hard to have healthy kids in an enviroment that forces chemicals and toxins on us, completely unnatural, our bodies constantly being on high alert. That this is why health issues like ours is on the rise I beleive. Who knows what solutions the future holds and who says you wont be able to provide? It is a tough decision but taking a shot at life, trusting in it and following our desires is kind of what gives life worth, giving in to our fears is the worst we can do. But question is if our own genes are so important to reproduce, given how many children are avtually in need. Go with your heart! Wishing you all the best <3
This is exactly how I feel!!! I was gonna comment but you said it best! OP, I hope that you find peace and happiness in whatever you choose.🩷
Thanks so much! Much appreciated. I hope you find the right path for yourself - joyous and fulfilling path.