An absent Inferior Vena Cava

sharahhn

hi @Airborne :) I’m so glad that you found my post on this website. I felt very alone when I was searching for people with this condition, but now, with the Facebook group and you here, it’s amazing that we can connect like this. I’m the only Swedish girl in the group on Facebook and I haven’t found any other Swedes yet, but that’s okay. I’m so grateful and thankful for all the people I have connected with. :)

The missing link was a very beautiful way to call it. So, you were 14 years old when you got diagnosed. You lived many years with it. Do you have any symptoms from it, and does it affect your daily life?

do you know if you are you born like this?

Really fun to connect with people all over the world :D Even though it’s a very unfortunate reason, it has helped me a lot and is incredibly beneficial. I’ve been able to share and teach my doctors a thing or two with the help of everyone else’s symptoms and stories. I’ve also been able to understand why I feel the way I do and piece together many parts of the puzzle that I couldn’t before. :)

Im also glad that @PaulB1980 found my post here 4 years ago, he was the first person I talked to with the same condition :)

Airborne

@sharahhn Good morning and thank you so much for your responding to my message!

When I came across this chat room and saw your posting about how lonely you felt, my heart sank for you because I have felt the same for years. But I have never given up hope that one day I will find others with the same condition, it's just sad that it's taken 30+ years.

But! the best thing now is, we have a voice and neither you or I or anyone ever needs to feel alone ever again!

In brief, I was 14 when I was diagnosed with a DVT (Deep Vein Thrombosis aka blood clot). Prior to that, I was living a healthy, happy life. It took me 8 long years demanding my physician's to conduct an exploratory examination to find what the root cause was and only then it was discovered that I was born without the entire Inferior Vena Cava.

While I take Warfarin (blood thinners) for the rest of my life there has been complications associated with this, such as varicose ulcers on my lower legs due to the poor circulation but luckily I have'nt had any for a couple of years.

I don't really have many symptoms from this condition, and to be honest with you, I've never really been able to accept that I have this.

I still do everything that the doctors tell me not to do haha. I think it comes down to the fact that I am no- longer frightened of my condition and I embrace every day as if it's my last day on earth.

I'm very mindful of what I eat, there's a few things I tend to stay away from such as spinach and kale as these vegetables have high levels of iron, which interact with Warfarin. I'm still very active, exercise every day such as walking, swimming and the occasional glass of wine :)

I really think that there's a lot about this condition that specialists don't know about. It's such a rare condition that affects 1 in every 12 million people world wide, I truly believe more needs to be done.

Most importantly, specialist's need to understand that this is not something that can be brushed off. You, me and all the others are people. We have feelings. We are scared and We feel alone.

I really think, especially now, that we need to reach out to the international medical community and let them hear our voices, that this is something very real and more needs to be done to address this.

We need and we want to be heard! We all have a voice in this.

In the 30+ years that I've had to endure this condition, I've read & researched a lot of medical papers on this condition from international medical institutes, and the one common factor the appears a lot in papers is that this condition appears to stem from a gene during pregnancy.

As you can tell, get me started on this subject, I can't stop talking about it hahaha. But I'm very passionate about this so I apologize for the long winded reply.

It's been so wonderful to have connected with Paul, and I'm even more excited now to have connected with you!

I'm not on FB yet, but as soon as I sort that out I look forward to talking to you more.

If you have any questions or just want to off-load, please don't hesitate to fly me a message!

And just remember, your no-longer alone!

Take care, be happy and look forward to hearing from you soon.