Saturday, May 3, 2014

Vasculitis Awareness

     May is Vasculitis Awareness month so I will be sharing my story of my cousin, Emma.  She is one of my best friends and have known her my whole life.

     As a child she was very healthy and showed no signs of vasculitis until a few years ago.  She first noticed pain in her leg.  She went to dozens of doctor appointments but they weren't able to give her a reason for her pain.  Then a doctor looked at the nerves in her leg and realized it was triple the size, if not bigger, than it was supposed to be.  The doctors took a biopsy of the nerve in her left leg and soon after she was diagnosed with vasculitis.

     What is vasculitis?  Vasculitis is an autoimmune disease in which the body's immune system attacks its own blood vessels, arteries and veins.  Vasculitis causes poor blood flow to the tissues throughout the body, such as the lungs, nerves, and skin.

     After Emma was diagnosed the doctors started her treatment which consisted of chemotherapy and steroids.  As a result her hair thinned out, she gained weight, and she had to watch her blood sugar.

     She tried to not let this disease ruin her life, however.  She married her fiance, had a big wedding reception, worked full-time, and flew to mine and Jim's wedding.  However, as time goes on she is slowly realizing that she can't pretend that this disease isn't affecting her life.

     Emma has nerve pain every day.  She has numbness in her left leg and foot.  She can't stand for a long period of time, nor can she sit for a long period of time.  If she does she will have debilitating pain shooting through her left leg.

     Because of vasculitis, she eventually lost her job at the Sunoco where she worked as a cashier.  Often times they had to send her home because she was in pain, she got sick, or she had a doctor's appointment.  Towards the end she was so physically exhausted that she had to set three different alarm clocks and none of them would wake her.  Her boss knew she was struggling and felt bad for doing so, but she had to think of the company, so she fired Emma.

     Vasculitis also caused a rift in her marriage so she moved in with my husband and I last June.  Now Emma and Shawn are trying to fix their problems while she lives with her sister.  She is also trying to get disability from Social Security.

     No one knows what causes people to get vasculitis.  It's not genetic and there is no cure.  There's always a chance that this disease can flare up once again or spread to another part in the person's body.

     So don't judge what you don't understand.  People with vasculitis are in constant pain and experience nerve damage, numbing sensations throughout their body, arthritis, and poor blood flow.  It is a debilitating and life threatening disease.

Emma before her treatment
Emma at her wedding reception on steroids
Emma now wearing her leg brace