Pots, Eds Type Iii And Children

[sarahmarie43]

Hi everyone!

I have been reading a lot of your posts since finding out about POTS in March of 2008, and have learned so much! I was diagnosed with POTS at Vanderbilt in January of this year, and with EDS type III (joint hypermobility) by Dr. Grubb last week. I am 29 and married, and planning on having children once I get my symptoms under control. I know that women with POTS secondary to EDS type III can have children, but I am wondering if the children are likely to inherit these conditions. I realize that there is never a guarantee that any child is going to be "healthy", and I will love my children no matter what, but I'm not sure I would want to have my own if I know that they are likely to have the same problems that I have had for the past 15 years. Of course, if they did start showing signs I would know what was wrong and be able to get them a diagnosis faster that I got mine, but do I want to take that chance? Would it be better to just adopt a child who (regardless of their health status) already needs a home? Any thoughts or information on this would be greatly appreciated. I know the decision is ultimately mine and my husband's, but it is important to me to make an informed decision.

Thanks!

Sarah

[Csmith3]

Statistically, there is a 50% chance of passing on EDS (or any other genetic condition). Even if you do pass it on, it does not mean the child will necessarily have the illness to the same severity as you. I suppose another thing to bear in mind is that a lot of people suddenly get ill with POTS even if they have EDS, which suggests some other factor or trigger is implicated even if the propensity to develop POTS is already there.

If I look at my family, very few have EDS. My Dad must be a carrier, but has not developed any troublesome symptoms.

I think if I felt well enough to look after children I would have them even if I did take the risk of passing on EDS/POTS.

Best wishes

[worththewords]

I had a long talk with Dr. Grubb about this awhile ago and I'm currently 6 months pregnant with my first child. I'm not sure about anything with EDS and the different types. He diagnosed me with Joint Hypermobility Syndrome. But he told me with POTS there is a 20% chance of passing it on but then he also told me that good genes tend to dominate the bad ones. My husband is very healthy so I hope our daughter will be as lucky.

It's a lot to think about and discuss with your husband your different options. My POTS was very stable 2 years prior to getting pregnant. It's been acting up since I got pregnant but it isn't anything I can't handle. I went 4 years without a diagnosis and I had an ablation, which I wish I would have never had, before getting a POTS diagnosis. The comforting part is that if our child ever started showing symptoms at least I would know what was going on and how to address it.

[MightyMouse]

Folks here are correct--you can look at ENDF.org or NIH for more info, but I was told as is stated above: It's a genetic dominant gene, so you only need one copy to have the disorder--so, 50/50 chance of passing on to a child, male or female doesn't matter.

Nina

[sarahmarie43]

Thanks for the replies! I didn't realize that it was a dominant gene, but I haven't read up on EDS much yet. I don't think either of my parents have any form of EDS, but my mom suspects that her older sister has it (they are not close), and a cousin of hers has type III as well, so she must be a carrier. I know I still have a lot of thinking to do... And I guess I can't really make any decisions until I am healthy enough to care for a child- hopefully someday soon.

Worththewords- best of luck with the remainder of your pregnancy! My husband is also very healthy, so at least we have that going for us

Thanks again to all, and take care,

Sarah

[chipper]

I have been blessed with three children and only one has it, my only daughter.

[Mrs. Burschman]

I have nothing technical to add to the discussion, but I just wanted to wish you luck in sorting through everything. Big decisions are hard!

Also, I haven't seen you around "these parts" before. Welcome! We're happy to have you on board.

Amy

[Maxine]

WELCOME sarahaz------------

One thing to think about................since you already know about POTs and EDS, you'll know enough to help prevent your children from not being injured by doing things that we did physically before we knew we had EDS. So at least some EDS complications can be avoided.

Also, if you are able, get the opinion of a geneticist who has knowledge of EDS/connective tissue disorders. Dr. Grubb is a cardiologist/electrophysiologist, and a geneticist who has vast knowledge of EDS can confirm the diagnosis, and also discuss information about passing the gene to your children.

Getting cardiac Echo's, and an ultrasound of your aorta yearly is important. I say yearly because a friend of my just died of a ruptured aorta, and she had hypermobile EDS. This came as a complete shock to me, because we don't think about this hitting someone with hypermobile EDS like someone with vascular type. However, all type of EDS are more vulnerable to vascular complication. Although my son wasn't screened for EDs, I begged him to get a cardiac acho, along with the aorta ultra sound.

Maxine :0)

[ramakentesh]

But he told me with POTS there is a 20% chance of passing it on but then he also told me that good genes tend to dominate the bad ones

Dr Grubb said that? Do you mean he meant EDS or JHS? There isnt any evidence that forms other than those secondary to EDS and hypermobile joints syndromes are genetic. Its quite possible and even likely that they are but you cant say that definatively.

[worththewords]

But he told me with POTS there is a 20% chance of passing it on but then he also told me that good genes tend to dominate the bad ones

Dr Grubb said that? Do you mean he meant EDS or JHS? There isnt any evidence that forms other than those secondary to EDS and hypermobile joints syndromes are genetic. Its quite possible and even likely that they are but you cant say that definatively.

I asked Dr. Grubb what the possibility was that I would pass POTS on to a child and he said 20%. I know of one other patient that he has told that to as well. We then discussed pregnancy with POTS and all the different ways it could go (some feel better, some feel worse in pregnancy, bed rest, etc.). I don't know where he gets the 20% from. Perhaps that is what he sees in his practice.

[sarahmarie43]

Thank you very much for the welcome! It is great to be here Well, not "great" that any of us have to be here, but great that this is available to people like us to support each other.

MaryMalta99- Congratulations on your three children! That gives me some hope. Did you have symptoms before or during your pregnancies? Does your daughter have the same type of POTS as you do?

Amy- Thanks for the good wishes- it is certainly a big decision, but I'm glad to have some resources to aid me.

Maxine- I am so sorry to hear about your friend! That's terrible. I will have to make sure to talk to my cardiologist about that. My aorta was normal (2.7, I believe) a year ago, but that's not something to take lightly. Thank you for that info. And I'm pretty sure my parents would have thought twice about letting me be a competitive gymnast had they known my joints were weak! So I guess I'm glad they didn't know I'm lucky to not have suffered any serious injuries, although the minor ones I did are coming back to haunt me now. I will also have to see if I can find a good geneticist. Good doctors in the Phoenix area can be difficult to find, but I'm sure my cardiologist here can recommend someone.

I look forward to getting to know you all

Sarah

[ramakentesh]

LOL. Just because Blair Grubb said it doesnt mean that its a fact. There are no pier reviewed research that demonstrates this as fact and until there is its speculative. He could be right but I know for a fact that other research bodies have very different opinions on this topic.

I was told by another respected authority on POTS that it was definately NOT genetic EVER. Now I know that this statement cannot actually be verified by examining the current research on POTS and because the actual causes of POTS are still be actively researched, debated and clarified, any firm statement about its genetic component is doubtful.

Quite often on this site I read patients quoting their doctors as definitive. Every time I read these posts I always think of about two or three opinions or even published research documents that demonstrate that the supposed fact is actually equivocal.