Von Hippel-Lindau disease is a genetic mutation characterized by tumors at any time throughout a patient’s lifetime in up to ten different areas, including the brain,spine, 

kidneys, pancreas, adrenal gland, eyes and ears. Renal cell carcinoma is a leading cause of mortality for those with the VHL mutation, affecting approximately 40% of patients.

After 15 surgeries including liver transplant and kidney cancer. I am facing multiple brain tumours.Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. The most common cause of death is respiratory failure due to pontomedullary or cervical cord compression. 

There were multiple cysts in the pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 3 days. 

Please help me with both proton therapy and pancreatic tumours removal. My monthly medicine and radiological and blood work.

Belzutifan is working wonders not only for vHL but helping other cancers

Approximately 60% of pancreatic neuroendocrine tumors responded (either by completely disappearing, called a “complete response” or by shrinking (PR). Thirty percent (30%) of hemangioblastomas also had a significant response (partial or complete) and one patient had a complete response in their brain/spine hemangioblastoma. In addition, there were 16 patients in the trial with retinal lesions and 11 of them (68%) experienced an improvement in their retinal hemangioblastoma other than RCc. 

About VHL

VHL or von Hippel-Lindau disease is a genetic form of cancer. VHL patients battle a series of

tumors throughout their lives. The VHL gene controls the major feeding pipeline of every tumor.

Curing VHL is one step closer to curing many other forms of cancer.

"Orphan drugs" are medicinal products intended for diagnosis, prevention or treatment of life-threatening or very serious diseases or disorders that are rare.

I appeal to the government to import the medicine not for rare disease vHL but for a greater good of curing cancerCancer cases in the country are likely to increase to 15.6 lakhs by 2025 — a 12% increase from current estimated cases — based on current trends, according to the National Cancer Registry Programme Report 2020. The figures were released by the Indian Council of Medical Research (ICMR) and National Centre for Disease Informatics & Research (NCDIR), Bengaluru