I have been suffering from a rare genetic disorder called Von Hippel Lindau (VHL) Syndrome since my early childhood.
This disorder results in excess blood flow due to hypoxia inducible factor (HIF) resulting in repeated tumor growths in different organs of my body. VHL is a lifetime disease. Patients need to be constantly checked and treated/operated for the tumors and cysts that develop at various sites in the central nervous system and visceral organs throughout their lifetime. Because of the complexities associated with management of the various types of tumours in this disease, treatment is multidisciplinary.
VHL, LIVER TRANSPLANT AND MDR-TB
Very often timely aggressive surgical intervention is the only cure. As a VHL liver transplant patient, I have undergone and 9 surgeries one brain tumor removal, besides grappling with MDR-TB which was diagnosed in 2010. I developed MDR-TB. Manifestation of my latent TB happened under immune compromised situation, confirmed by a radiological conference facilitated by Dr Randeep Guleria at All India Institute of Medical Sciences (AIIMS). I developed pulmonary, bone and lymph involvement, to such an extent that it gnaws my bones and I walk with help of a four-toed stick.
The latest CT study of my chest reveals multiple nodules, many of them calcified, and also fibroatelectatic lesions in both lung fields. The appearance is consistent with chronic tubercular lesions. Compared with previous CT chest studies of 2010 and 2011, there is relative regression of the lung parenchymal lesions. CT study of head reveals an enhancement in right cavernous sinus as well as right convexity. In view of the size of lesion and my age (33years), radiosurgery-- cyber knife—has been suggested by doctors at Medanta Medicity Hospital.
FATHER'S DEMISE, MOUNTING PROBLEMS, and VHL-RELATED TUMOURS
My father's sudden demise in 2010 has left me and my mother in a penniless situation, and my younger brother is now the sole earning member of the family. We are left with nothing to carry on my treatment. We are homeless, being evicted by landlords as and when they feel I am contagious because of my TB. At present I am living in a crummy rented place with narrow stairs, without ventilation, which is having adverse effects on my lung lesions, bone TB and hypoxia related VHL tumors which are growing fast. Initial support was provided by my friends and well-wishers but they and my brother can no longer pull the economy of my diseases together.
I hence appeal to you to give me a helping hand. So far, I have gathered plenitude of experience but not lost the verve to live. Cyber knife doesn't make me faze out with fear, but lack of funds and understanding makes the feelings worse. Please help me live the joyous life with a rare disorder as I am a survivor and not merely a sufferer.
Payel Bhattacharya, Citizen News Service – CNS
(Payel wrote her personal testimony for Citizen News Service – CNS, and she is surviving VHL syndrome and complications such as recurrent tumours. Multidrug-resistant tuberculosis (MDR-TB) is another health challenge she is currently facing. Her contact details are online at: www.citizen-news.org)