PATIENT STORY VON HIPPEL – LINDAU SYNDROME

PATIENT STORY—VHL, Jaipur

January 21, 2019June 16, 2022 Ask4healthcare

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VHL Patient from Jaipur

I am Dr Rashmi, a postgraduate doctor (MBBS, MD) from Jaipur, India; suffering from VHL that is Von Hippel – Lindau syndrome which is a pretty rare genetic disorder, occurring in about 1 in 30,000 people. I am suffering from it since 1994, that is, almost 25 years now.

Today I am sharing my story from other side of the table that is not as a doctor but from patient’s perspective.

Way back in 1994, busy enjoying my newly married life and a decent job in a scenic place near Udaipur, Rajasthan; I had the first jolt when I was diagnosed with a brain tumor. I had all the symptoms related to it like severe headache, vomiting, vision disturbance, problem in walking and maintaining my balance, etc. I was 29 years of age then. Like any other patient, I too passed through the typical phase of—“NO, it can’t be true” followed by—“Why me” and then finally came to terms with the diagnosis.

In 1994, internet was not as easily available as today and I had to spend a lot of time gathering information from doctors I knew until I could finally contact Dr Siddhartha Ghosh, an expert neurosurgeon and got operated by him in Tamil Nadu Hospital, Chennai. Along all these 25 years, whenever I developed any symptoms, I had to undergo surgery and have undergone three major brain surgeries, one spinal surgery and one surgery on my kidney till now. Two of the later surgeries (brain and spine) were also done by Dr Siddharth Ghosh at Apollo Hospital Chennai.

After searching a lot on the internet, I also came across an organization vhl.org which is very helpful, dispensing all disease related information.

All this while, I was also searching for a Centre where I could be examined in whole as a VHL patient and not in individual specialties. I then came to know of a fantastic team of doctors in Amrita Institute of Medical Sciences, Kochi who are working for VHL patients. I go there now for my review (Dr Ashok Pillai, neurosurgeon, also underwent one brain surgery by him; Dr Ginil, Urology specialist).

In this journey of getting the correct diagnosis, reaching to the appropriate doctor and then getting treated, I realized how difficult and tiring it was for me in spite of being a doctor. It was then that we conceptualized and started Ask4Healthcare to help patients in their journey. I am proud to be a part of the team at Ask4Healthcare which is now providing the much needed help to approximately 2 Lakh patients per month, suffering from different diseases and approaching us from different parts of the country and abroad.

I am not undergoing any treatment presently but remain under regular follow up and take treatment as and when the symptoms appear. Regular meditation, exercise, healthy lifestyle, positive attitude, and tremendous family support help me tide over the crisis and keep myself calm and peaceful.

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To read this article in Hindi, click here