I have a rare disease called VHL or Von-Hippel Lindau--this is a cancer-suppressing gene and those people who have VHL disease have a mutation, turning you into a tumour producing factory.
In my case, blood-filled tumours form in up to 10 organs of the body.
The only treatment is the removal of tumours, irradiation, and monitoring.
Unfortunately, multiple tumours formed in the liver which splayed,compressed and displaced vital vessels and I had a liver transplant leading to turning off of the immune system.
The side effect in question? These medications may increase your risk of infection.
This almost implies that if you are taking some of these medications you will fall ill every time you pass by someone with the sniffles along with the big stuff, like the flu or tuberculosis or end up with Covid like me.
I experienced horrors that would give most people nightmares for life but the thing is if you face serious issues from a younger age you don't cringe inside or give up on life. The older you get without ever having a real problem you don't know how to handle it. Starting early gives you a perspective if you don't die first.
After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant and infections like MDR TB including pulmonary, lymph and bone.
I was diagnosed with leptomeningeal hemangioblastomas after the cyberknife in 2013.
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.
Currently, I am suffering from serious multiple brain tumours reported globally from 1902-2013 only 132 cases and perhaps I am the first one in India. The small tumours floating around in the fluid used for cushioning the brain and spine tend to compress all the nerves that come their way. Hence the first nerve to be compressed was the optico-hypothalamic nerve which made me blind with my right eye even after killing radiation therapy.
I got a swallowing problem. The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII).
After 2017 I also have a chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.
A proton beam directed at a tumour travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumour.
The mutation of the gene is confirmed in AIIMS research.
I have no income. I write for Times of India digital without honorarium and my mother who is a pensioner draws barely enough pension to feed and clothe us, leave alone pay for my medical expenses. Friends donate who think I should live more and write more.
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 diarrhoea feels better but you can confirm it is around Rs 3000 and lasts for only 2 days.
The hypoxia-inducible transcription factors have also been shown to play a crucial role in tumour promotion in other cancers including breast, brain, colon, gastric, lung, skin, ovarian, prostate, renal, pancreatic. Increased levels of growth factors result in angiogenesis.
All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.
The complexity of their existence, the trials of maladies forced me to struggle to live.
The will to live is an unstoppable thing. Most people live only when they are about to die.
It may sound complicated, but having a VHL diagnosis shouldn’t consume a patient’s life. In fact, monitoring through routine screenings is one of the most important components of care for patients with the inherited condition, which puts them at an increased risk for developing tumors.
The will to live is an unstoppable thing. Most people live only when they are about to die.
Please donate for my proton therapy according to your preferences and ability
As delay can cost my life.
https://www.ketto.org/fundraiser/help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder
