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.