Help Volya Fight a Rare Autoimmune Disease

Four years ago, Volya was diagnosed with an aggressive and rare autoimmune disease, which attacks and destroys protein that holds skin cells together.

After the initial acute episode and diagnosis, she went through countless ER visits, brutal IV Steroids treatments, and had to fly to Belarus for a hemodialysis course. The disease, unfortunately, is refractory (almost unresponsive to treatment). Conventional immunosuppressive therapy and atomic doses of steroids gave very mild positive effects and had horrible side effects with gradual organ failure. In hopes to achieve remission, doctors initiated excruciating Ahmed’s protocol to burn all white B-cells to the bone marrow with bio-chemotherapy (with seven chemotherapy sessions and a couple of ER visits as a result during just the first month). Unfortunately, the disease seems to be extremely stubborn, and there’s no remission in sight. However, Volya is also not the one to easily surrender.

One of the major side-effects of the prolonged immunosuppressive therapies is loss of the bone tissue and severe infections. During the last year, Volya had to undergo two emergency dental surgeries: infection ate the bone all the way through to the left eye. And although it was fun to blow bubbles with the eye, the infection needed to be urgently removed and passage to be closed and bone restored.

As of today, the most effective treatment that allows to keep disease in check is monthly three-day-long supportive chemotherapy followed by a 10-day recovery period. The therapy is not only hard on the body, but it also comes with the exuberant bill of 24K per month. Thankfully, insurance covers a major part of it, leaving around 10K out-of-pocket for chemotherapy and medications costs. Emergency dental surgeries came out at around 12K total (6K each).

We don’t know when there will be remission or even if there will be one. But until there’s even the slightest chance for recovery, Volya will kick, grind, and move forward, even if it’s just an inch at a time.

If you would like to assist with covering the cost of this therapy as well as some of the piling medical bills, any donation would be greatly appreciated. All funds raised will go directly to Volya's medical costs and related expenses. On behalf of Volya, her closest friends, and family I appreciate your support, prayers, and sharing of this GoFundMe page. Thank you!