Wishing
the Indomitable
Irina Slutskaya, World Figure Skating Champion, has an extremely rare autoimmune disease called Churg-Strauss Syndrome, a form of vasculitis. Vasculitis, or inflammation of blood vessels, can cause organ and tissue damage when affected vessels do not receive enough blood. Churg-Strauss vasculitis can affect the skin, lungs, heart, nervous system, kidneys and gastrointestinal tract. In addition, Churg-Strauss patients sometimes suffer from peripheral neuropathy, causing severe tingling, numbess, and pains in the hands, legs or feet. Churg-Strauss Syndrome can be fatal if not diagnosed promptly and treated effectively. There is no cure, only remission.
Churg-Strauss Syndrome started to affect Irina in the summer of 2003 when she had pain in her legs and extreme fatigue. She was diagnosed with pneumonia, pericarditis (inflammation of the two layers of the thin, sac-like membrane that surrounds the heart) and chronic asthmatic bronchitis, all conditons which can be attributable to Churg-Strauss Syndrome. Unfortunately, standard treatment for these condtions is not the same as treatment for Churg-Strauss Syndrome and Irina's condition worsened after a period of time. Fortunately her doctors in Moscow soon recognized that she had this very rare disease and treated her accordingly before she suffered permanent damage. Treatment for CSS consists of quieting the inflammation of the blood vessels and suppressing the immune system. Corticosteroids are the first line of treatment with more powerful immunosuppressive drugs used when there is major organ involvement. Even though doctors recommended she take a year off to recover, Irina returned to competition after a few months, competing in the 2004 World Championships. The fact that Irina's disease is under such good control and that she can perform brilliantly in grueling skating competitions is testament both to her good medical care and her own indomitable spirit.
I had the great pleasure of meeting Irina at an open dress rehearsal of The Champions on Ice tour in March, 2005 in Springfield, MA. She accepted literature from the Churg Strauss Syndrome Association, an organization dedicated to raising public awareness about Churg-Strauss Syndrome and providing assistance in understanding the disease and treatment process. The organization also hopes to stimulate and support research into the cause and cure of this extremely rare disease. Irina was very gracious and gave a message to those who are struggling with Churg-Strauss Syndrome. She said, "...to keep believing and fighting. I got up and so can you. If I can overcome my illness and go on, so can you."
Irina at an open dress rehearsal for Champions on Ice in March, 2005. She is holding literature from the Churg-Strauss Syndrome Association.
In person, Irina is warm and empathetic and very kind. Besides her own serious illness, she has been affected by the chronic illness of her mother, Natalya, who suffers from kidney disease. Irina, a devoted daughter, opted to skip the 2003 World Championships so she could stay by her mother's side after Natalya suffered kidney failure. Natalya is now undergoing dialysis as she waits for a kidney transplant. Facing chronic life threatening illnesses can make one bitter and defeated, or can make one appreciative and determined to make the most out of life. Irina clearly falls into the latter category . She is exuberant, playful and joyful and a whirlwind of energy on and off the ice. Her eyes sparkle and she skates with incredible skill and joy.
We at the Churg Strauss Syndrome Association are in awe of what she has accomplished and appreciate her message of hope to those with CSS. We wish her all the best at the 2006 Olympics.
Below is a brief
history of Irina's triumphs:
Jane Dion,Director |
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