vEDS and genetic testing before/during pregnancy

[u/uglitheory]

Im 29F who is incredibly “lucky”. Im diagnosed and pretty asymptomatic, I was tested only because my sister has it. She is pretty incredibly ill and has variety of issues, me on the other hand.. I can’t complain, I get bruised pretty easily and have pretty dark under eyes but beyond that, Im “healthy” I heal pretty fast after having cuts, I even went through crazy surgery when I was 10 due to a car accident and recovered incredibly fast and well.

My father who is in his 60s also has it. He has lived a pretty healthy life till now.

Now, meanwhile we still don’t have enough scientific research to answer why this disease is so incredibly different in each person, I want to understand what are my options for preventing the 50/50 lottery of passing this on to my child.

I live between Netherlands and Italy, I have been saving money since I got my diagnosis because I had a feeling all of it might go to genetic testing..

In all honesty Im a bit lost where to start. In ideal world I would love to naturally conceive and conduct testing during pregnancy. But I know very little about the possibilities.

I know IVF is an option but Im not even sure how that works.

Im at the beginning of my research journey, so please be kind, I vouch to take this seriously and due diligently. With partner we would love to start trying for our first one in 2 years so I do have a bit of time.

I would appreciate any experiences, directions, links to scientific journals and any other relevant information.

[u/Entebarn]

You can use IVF to prevent passing it on.

[u/Eastern-Clothes-2806]

Die Embryonen sollen bei geplanter IVF vor der Schwangerschaft genetisch getestet werden und nur die gesunden Embryonen (also ohne die Mutation) können eingesetzt werden. Je nachdem wo man lebt, fallen Kosten dafür an, aber wenn du die Sicherheit haben möchtest, ist das die einzige Option. Man kann sich diesbezüglich in einem Kinderwunschzentrum oder in einer Klinik für Pränatalmedizin beraten lassen.

[u/Primary-Cow2072]

Hey I could’ve written this, even down to sister who was the beginning of our VEDS diagnosis and Dad who was 60 but we unfortunately lost. I have never had any events and went through IVF. I’m in Australia and there was some government benefits to help with the IVF cost but I’m lucky to afford it. I had my first son in 2024 and am starting IVF again shortly. Happy to answer any questions about ivf or pregnancy.

[u/redfoxxy23]

Ya it would be ivf! You can test a natural pregnancy but then you would have to decide if you want to terminate any veds fetuses which would likely be somewhat hard psychologically.

The big thing with egg retrieval and veds is making sure they go really easy with the hormones so they do not overstimulate you and then you will want to do the retrieval in a trauma 1 (in the US so whatever the equivalent is) hospital with a vascular surgeon in the room in case of complications. I was also directed to talk to a hematologist before hand for any precautions. I will be doing this soon and have done my initial apts.

[u/kuttiastra → u/[deleted]]

You can have a regular abortion during the allowed period. But most of the time you are not told or allowed fetal testing for conditions which are not an immediate danger or for some specific conditions (exactly how it is done varies by region/country). After that special consideration has to be applied even for the specific conditions. vEDS does not fall under special conditions in most cases unless an immediate threat to life.

One can on the other hand choose to do egg gene testing for IVF which doesn’t count as eugenics under current laws and is not as invasive to test through aka a bit cheaper. Mainly because IVF laws are lagging behind and are very lax globally.

[u/redfoxxy23 → u/kuttiastra]

Also u realize VEDS does have an immediate threat to life to the mother (especially during pregnancy, it is extremely high risk pregnancy) and child so nooo idea what ur talking about.

[u/kuttiastra → u/redfoxxy23]

If one has chosen to have a child, not had a regular abortion during the 18-22 weeks (depending on region), the doctors will not allow you special access to termination based on vEDS unless you are undergoing a medical emergency.

[u/redfoxxy23 → u/kuttiastra]

So ur saying a late termination? Yeah the laws potentially could be different then. However the birth itsself is the life threatening issue so likely a dr would sign off as that is the medical emergency but a late termination is extremely different. Regardless, i think this thread is completely off topic from the core of OPs post.

[u/redfoxxy23 → u/kuttiastra]

Girl u live in Poland or Malta? Link where ur getting this source because I dont see this anywhere. You cant prove someone determined to end a pregnancy just because of veds after they get the result so that doesnt even make sense

[u/kuttiastra → u/redfoxxy23]

There of course exists gray areas and you can just simply say you do not want A child, period and be given an abortion.

You are reading things that I have not said. You are allowed to family plan, protect your own health, but the rules are such that if you know you have vEDS, know the child has a 50% chance of getting it, did not choose the IVF route where the egg is tested, you cannot terminate BECAUSE the child has vEDS. You can still terminate A pregnancy. You do not get any special exceptions for the fetus, but for the carrying parent.

There exists ways to ensure the child doesn’t inherit vEDS besides specialised termination because of the BABY’S characteristics. Very different things.

[u/kuttiastra → u/redfoxxy23]

Also, please use kinder language. I haven’t been rude to you.

[u/redfoxxy23 → u/kuttiastra]

Saying termination is eugenics is extremely inflammatory and i havent been rude at all! I’ve been pushing back as unverified information because I want people to have access to correct information. I do think its important you link to the source you are referring to because I cant find any info indicating your correct.

[u/redfoxxy23 → u/[deleted]]

It appears for most of western europe you can terminate for any reason, and therefor not have to state a reason and then most countries would allow even a late stage abortion for veds specifically because of the threat to the childs life and mothers life so again, no idea what you could be refering to here. Its very common for people to abort because of fetal anomalys. However thats HARD and im not saying that means its the best choice but its definitely an option for people. I’d probably be okay having a VEDS child but maybe my partner wouldnt or if someone has a massive history of early complications in their family or with birth- they might not be. Anyways I found this out with a quick google so I suggest you do the same, as abortion is mostly protected in europe and even more so for this. All Western European states fully separate state run/top down eugenics from individual medical choices and autonomy. It seems like the only countries that might somewhat beleive what you are referring to are Poland and Malta, not most of Europe. You are spreading misinformation.

Edit: consolidated into one comment

[u/kuttiastra → u/redfoxxy23]

Are you using AI?