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 tumor-producing factory.
In my case, blood-filled tumors form in up to 10 organs of the body.
The only treatment is the removal of tumors, irradiation, and monitoring but unfortunately, multiple tumors formed in the liver which compressed and displaced vital vessels and I had a liver transplant leading to turning off of the immune system. Curing vHL brings us closer to curing many forms of cancer.
All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.
The will to live is an unstoppable thing. Most people live only when they are about to die.
VHL is a tumor suppressor protein that is localized in the nucleus or cytoplasm, the extent to which being dependent on cell density.
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.
VHL is the key to know how tumours grow and how potential therapies can inhibit angiogenesis.
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.
Between 1902 and 2013, approximately 132 cases have been recorded.
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.
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.
The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumour but also the healthy tissue that the beam encounters on its way towards the tumour and beyond the tumour. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.
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.
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 2 days.
The will to live is an unstoppable thing. Most people live only when they are about to die.
After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant I want to survive my life threatening condition with an unquenchable thirst for life.
I, who swam the seas with vigor, without any complaint, felt the warmth of sunshine in the emptiness of my life, from the quest for knowledge I got to know more about my diseases.
My request is to help me according to your preferences and ability.
I was diagnosed with leptomeningeal hemangioblastomas 6 months after the cyberknife in 2013.
Currently I am suffering from a serious multiple brain tumors which has been reported globally from 1902-2013 only 132 cases and I am the first one in India. The small tumors 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 right eye even after radiation therapy.
The next time it became bilateral trigeminal nerve. I got a cyberknife on 17/3/2020 but the left nerve is not done, hence it feels like someone is holding a bare electric cable against my cheeks or any part of the face.
After this cyberknife 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).
It should be emphasized that the structures involved in the swallowing process are pairs, both anatomically and/or functionally, due to the dual-side innervation.
Anatomically unique, the tongue, palate, pharynx, and larynx are functional pairs, each side having independent innervation.
Currently I can't stand for long, gait problems and electricity flows through the right leg. Also my bladder and bowel control is lost. All these can be to some extent treated with proton therapy and chemotherapy.
Because from 18/3/2020 we are under voluntary isolation and just
Because of an unfortunate event I developed Covid 19
Blood tests at times are a good marker of inflammation and they can also give you and your doctor an idea of what is going on in your body, in particular, the C-reactive protein and the D dimer. Both of them are said to be a good testing ground for understanding what is happening in your body.
D dimer and CRP but no antibody. Antigen couldn't be tested because it might hurt my throat. Bilateral trigeminal nerve, vagus, Hypoglossal, Glossopharyngeal, facial, auditory are all compressed by tumours.
The RT-PCR test was not done in my case because I have Trouble swallowing food and medicines, Here I'd like to state 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).
Both Naso and Oropharyngeal samples are collected. If have problem in nasopharyngeal then it can be done in Oropharyngeal sample only
Hence it might be extremely hurtful as I get pain in the pharynx and larynx and often my tongue gets paralyzed. Voice becomes hoarse after speaking a bit.
My CRP was high and D Dimer critical
Meanwhile, the oxygen level suddenly dropped and NGO Jeevan Stambh loaned me an oxygen concentrator
I have 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 a month of the first symptoms, I formed antibodies under immunocompromised conditions.
Dr Harsh Mahajan worried about CRP getting raised.
Higher than 16.4 in my previous report
Now D Dimer is no longer critical.
Retracted novel CoV similar to the genetic sequences of human immunodeficiency virus (HIV) and Ebola.
A stunning cocktail like Coca cola
Hence its difficult to find if I bled from the bowels were due to Covid or pancreas related diarrhea.
Treating doctor Neeraj Saraf said to Repeat CRP and D Dimer after 10 days.
I was diagnosed with tuberculosis which was later found to be Multi-drug-resistant Tuberculosis. After a couple of years of disappointing treatment at Medanta Dr Randeep Guleria treated me
After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant I want to survive my life threatening condition.
I have no income. I write for Times of India digital without honorarium honorarium and typing with the index finger of the right hand because after the had got palsy and was treated with high-dose steroids the hand doesn't work like before and the left had after recovering from paralysis didn't get back the sense of touch and both halves of brain lost coordination and refuse to work together. 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.
The first nerve to be compressed by my leptomeningeal HB was the optico-hypothalamic nerve which made me blind with my right eye even after radiation therapy.
My request is to help me according to your preferences and ability.
https://www.ketto.org/fundraiser/help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder
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