375 Days. What is VEDS?

In 2008, after being sick for a several years with an illness nobody could explain, I got an unpleasant surprise: an aneurysm ruptured in my leg, causing a lengthy recovery and permanent nerve damage and severe pain, the kind that awakens me from sleep screaming sometimes or collapses me on the floor, holding the leg.  The result, however, was that I was finally diagnosed with a genetic disease, Ehlers Danlos Syndrome, Vascular type (VEDS), a rare disease (about 250, 000 people total are thought to have it).  At least I knew why I was sick.

EDS causes a defect in the body’s formation of collagen that can cause hypermobility in joints (being able to bend the thumb down to touch the bone under the wrist, for example, and all varieties of unusual double-jointedness, depending on the way the disease affects the individual), and constant pain.  But more seriously in VEDS, that malformation also occurs in blood vessels, which frequently causes them to balloon, forming aneurysms, and dissect, which is to tear.

Existing treatments for aneurysms are advanced, requiring no traditional surgery. Stents can be threaded through a small incision in the groin and brought (using a micro-camera) to the site and used to replace the vessel that is damaged. This is remarkable, and the best treatment available, since no specialized medication is available for VEDS. Avoiding surgery is critical, since doing surgery on someone with VEDS is comparable to trying to sew on wet toilet paper.

Unfortunately for me, though, according to my doctor, my aneurysms are in places where stents would not be effective.  Several of my aneurysms are on the renal arteries (near my kidneys), and the most dangerous one is on my superior mesenteric artery (SMA) (below the aorta).  This is where arteries are huge.  For comparison, the aorta is the size of a garden hose.  Making the tiniest surgical mistake on the SMA would be immediately fatal; the surgeon explained that in the case of fixing the aneurysm surgically, the risk outweighs the benefit.  If it ruptures, I will die immediately, before anyone possibly could fix it.  Thus, my predicted shortened lifespan.

Here’s the good news:  unlike many people my age, I have low blood pressure, which means less pressure on the aneurysm to grow.  Having consulted with a nutritionist, I am a vegan (gluten-free as well) and I eat a reasonable amount of protein and take many (excellent quality) vitamins and nutritional supplements for maintaining my health (and I’m happy with the brand I’m using). Not eating garbage, especially meat with hormones of all kinds injected, is very important.  I believe taking these important steps will lengthen my life beyond that doctor’s flip prediction.

What do you think?  Do you agree that my diet may have an impact on my lifespan?  How about my use of nutritional supplements?  Do you use them?

375 days.  Tick, tick, tick.

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4 thoughts on “375 Days. What is VEDS?

  1. Pingback: Day 286. You Can’t Study For a Genetic Test | heidiwriting

  2. Pingback: Day 186. VEDS Pinup Girl | heidiwriting

  3. Yes, I agree that you diet can help improve things. My husband has been recently diagnosed with VEDS and he also has low blood pressure. He is taking it slowly and making changes….fingers crossed it all works out. Also, that treatment…must be around the corner. I wrote to Dr. Dietz who told me that they have successfully built the VEDS mouse model and though their research is in the preliminary stage, they are working hard. That is amazing to hear…so keep the blood pressure low, eat well and take good care. That light at the end of the tunnel is not so far….Gentle Hugs. 🙂

    • Hi, Loveroflife.

      I am sorry to hear about your husband’s diagnosis. Thank goodness it’s just that, a diagnosis. Tell him to keep that in mind–it’s just a diagnosis and not a death sentence, no matter what any harebrained doctor tells him! The fact that he has low blood pressure is extremely important, LofL, because it indicates that there isn’t a great deal of pressure on those blood vessel walls; thus he is not as likely to form aneurysms, “grow” them if they already exist, or (most importantly) rupture them.

      Does your husband have aneurysms? How was he diagnosed? (it’s okay, btw, if you don’t want to answer that, or if you want to email me to talk back-channel about it–I understand that there are so many feelings that go along with this. I just got to a place where I wanted to know what others were going through, and that info was harder to come by four years ago when I was diagnosed….so I just wanted to be available for you). I guess you have read my story, so I don’t need to elaborate, but if you have questions, I’d be happy to answer whatever you would like to ask.

      Anyway, I love Dr. Dietz–I grew to be a fan after seeing him speak at an EDNF conference. He is really wonderful, isn’t he? I had occasion to speak to him once, too. I was shocked that he answered his own phone and was so generous of his time, and to someone he didn’t know from Adam–after all, he’s a very important guy.

      Gentle Hugs back to you and your husband.
      Heidi

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