Friday, February 3, 2012

An Open Letter to The Vasculitis Foundation

I am completely baffled by the VF's stance on urticarial vasculitis. You treat us like second class citizens and continue to tell us that we do not belong. Do you know more than our plethora of doctors, biopsies, and lab tests or did you just read 1 or 2 articles of the very limited amount of information online about this very rare form of vasculitis?

You said this to one of the members in my support group, "They [vasculitides] are autoimmune in nature and potentially life threatening and can negatively affect a patient's quality of life. The treatments involve a combination of high-dose prednisone, disease modifying medications, chemotherapy,... and biological drugs. Please know that I do understand that UV can be very say the very least. I have I empathize."

Do you think because the word "urticaria" is in UV that we just suffer from occasional hives? UV is a systemic autoimmune disease that most of us have been dealing with for 10-30 years. We take high-dose prednisone, DMARD's, chemo, and biologicals just like you do. We suffer in pain with severe fatigue just like almost every other autoimmune disease. Some of us develop new autoimmune diseases along the way, just like you do. Some of us develop necrotic sores on our legs, while some of us are luckier and the vasculitis just leaves bruises where the veins burst or leaked blood. Some of us have developed pulmonary fibrosis, paralyzed vocal cords, digestive issues similar to Crohn's, the list goes on - and it is all secondary to urticarial vasculitis. This isn't some minor skin inconvenience of hives as a reaction to some other illness or an allergy. This is an autoimmune disease classified as vasculitis by a biopsy that requires treatment by a rheumatologist, NOT a dermatologist as you suggested.

I used to raise money for the VF, hand out brochures and try to raise awareness about vasculitis. I was mentioned in one of your mail-outs as the contact for my area. I was once asked to join one of your boards to help raise awareness. (I thought you were asking me to raise awareness about UV, but now I am really confused!) My father has been wearing one of your bracelets in my honor everyday since I was diagnosed. It is hard enough trying to find a reason to get out of bed every day and deal with the crappy health card I've been dealt, but then to find out after all of these years that the organization that is supposed to fight for me still won't even acknowledge me as one of their own... well, that is the last straw for me! I think I will tell my father to take off that bracelet today.