Vasculitis Question Produces Same Old Answer

Posted by Lew on January 15, 2010

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I came across this post the other day from a woman who asked a question on the Mayo Clinic website…and if you click the link, you’ll go to the whole article there…

” Dear Mayo Clinic:
I have read that vasculitis is a rare disease, but I am beginning to wonder if it is rare or if doctors just don’t understand it. My husband has this condition, but the routine blood tests performed come back negative. How can we know for sure if vasculitis is the correct diagnosis? If it is vasculitis, what are his treatment options? “

Now I have included part of the Mayo Clinic’s response below…

” Vasculitis is a serious condition because damage to the blood vessel wall can cause narrowing or blockage of the vessel. The result is a lack of blood to the organ that the blood vessel supplies, which can lead to organ damage. The type of damage depends on the organ affected. For example, if the blood vessels of the lungs are affected, a patient may have bleeding into the lungs and shortness of breath. If vasculitis is damaging the kidneys, a person might experience kidney failure. Occasionally, blood vessel wall damage can weaken the wall itself, which may lead to formation of an aneurysm (outward bulging of the vessel wall). ”

” Because vasculitis usually is a chronic condition, treatment typically lasts years. Most patients require long-term immunosuppressive therapy. Given his situation, I’d recommend your husband be evaluated by a rheumatologist. If the diagnosis remains inconclusive, evaluation in a specialized vasculitis center may be necessary. “

Now, this of course has been typical response ( Canned ) answer to what has become over the last year for me repeated question asking by the general populace about a disease that actually has been around for quite a while but still seems to baffle patient, caregiver ( family ) and even a lot of physicians still!

I find this a bit frustrating as I continue my quest for knowledge about this topic ( and there is a lot of info to read trust me! ) but the problem for me usually stems from the available knowledge already out here…have you ever tried to read a case study done on a condition? Trust me, it’s mostly ” Physician Speak ” language which I really cannot decipher, but the next time I come across one of them or I decide to search for one, I’ll link it or just post it here in it’s entirety.

So, thanks to the Mayo Clinic for the pat answer ( maybe the only answer to give all things considered ) but I wish we could just have a real answer, a definitive answer that has the following sentence included…

” Your Vascular Condition is controllable with certain medications relative to your particular vasculitis strain, and you can expect a complete recovery within ( put your own length of time here! ) and live a normal, stress free lifestyle. “

I guess for me, the term ” Remission ” is not the same as ” Full Recovery ” which to me would mean, the vasculitis has been cured and gone, never to return…that’s what Santa can fill my stocking with next Christmas…along with a winning lottery ticket with a huge payout!