Help Volya Fight a Rare Autoimmune Disease

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

After the initial acute episode and diagnosis, she went through countless ER visits, brutal IV steroid treatments, and had to fly overseas for a hemodialysis course. Her disease is refractory—meaning it responds minimally, if at all, to conventional treatment. Even the most aggressive immunosuppressive therapies and high-dose steroids offered only slight improvement, while triggering devastating side effects, including progressive organ failure. In a desperate attempt to induce remission, her doctors turned to punishing Ahmed’s protocol—a form of bio-chemotherapy designed to eliminate white B-cells down to the bone marrow. Within the first month alone, Volya underwent seven chemotherapy sessions and multiple ER interventions.

One of the major side effects of prolonged immunosuppressive therapies is loss of bone tissue and severe infections. During 2024, Volya had to undergo one emergency and one restorative dental surgery: infection keeps eating the bone next to already restored tissue.

On top of her primary disease, in March 2025 Volya was diagnosed with a secondary autoimmune condition, which attacks and gradually destroys her thyroid.

The only treatment that has consistently helped manage Volya’s condition has been a rigorous monthly regimen: three consecutive days of supportive chemotherapy, followed by a 10-day recovery period. Unfortunately, beginning in mid-2024, the cost of this life-sustaining therapy surged dramatically, reaching $16,000 per day.

At the same time, her medical team began preparing for a promising next step—enrollment in the second phase of human trials for an experimental CAAR-T-cell therapy. To qualify, Volya must gradually discontinue all immunosuppressive treatments. As of February 2025, her chemotherapy has been paused, and her daily steroid dosage is being carefully tapered. Several additional criteria must still be met, and her doctors remain in close coordination with trial researchers to ensure she has the best possible chance of being accepted.

The good news is Volya’s symptoms have subsided significantly, and even without monthly chemo treatments and with decreased steroids, there have been no major disease flare-ups. However, there’s no remission either.

As of today, insurance covered a major part of the January chemotherapy treatment, leaving around $7K in out-of-pocket costs. Emergency dental surgeries came out to around $12K ($6K each), bringing the total to $19K.

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!