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Kolkata woman needs your support to fight rare genetic disorder #mustshare #Sundayreading

 

 

Payel, sent me a message on Facebook, seeking support, below is her  story

 

Having already undergone several surgeries, brain, thyroid being major ones and a liver transplantPayel Bhattacharya (33) of Kolkata is a survivor.

 

But her fight is far from over.

 

 

 

 , who suffers from a rare genetic multisystem  disorder called Von Hippel-Lindau syndrome ( VHL)- characterized by development of a variety of benign and malignant tumours due to abnormal growth of  blood vessels

 

 

 

The manifestations of the syndrome are protean therefore longterm/life-long surveillance by modern imaging techniques and  timely aggressive removal of tumours surgically is necessary and only way out.

 

 

 

Undergoing treatment at a private hospital in the city, Payel is currently staying with her mother in New Delhi. But her modest financial situation is proving to be a big impediment in pursuing the costly medical treatment.
Payel has developed tumours in various sites.

 

 

 

Proper diagnosis of happend during  liver transplant by Dr.A.S.Soin & Dr.Sanjiv Saigal and team on 6th Aug 2008, shortly after which father passed away.

 

 

 

Date of Surgery/ related infection

Site of Surgery/ related infection

Diagnostic evaluation

 

 

 

18/03/1993

Metatarsals

Cavernous hemangioma

 

 

 

Dec/1994

Rt.knee

Cavernous hemangioma

 

 

 

6/02/2006

Thyroidectomy (thyroid)

Multinodular goitre with retrosternal extension and a prominent cavernoma

8/12/2006

Craniotomy (haemorrhaged brain tumor)

Cavernous hemangioma

6/08/2008

Liver transplantation

Vascular malformation

26th July 2009

left fore-arm

Dr.A.S.Soin removed a cavernous hemangioma

6/8/2010

Tuberculosis

Initially treated by prophylactic drugs, developed active disseminated multi-drug resistant TB which was latent and evident in PET Scans prior to liver transplant.

18/ June/2013

Cyber knife Brain

extra dural based well defined nodular lesion adjacent to rt cavernous sinus
Planned for SRS cyber knife to a total dose of 1500cGy to the two lesions, by Dr.Aditya Gupta

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

she hasn’t been able to keep up surveillance by imaging due to lack of funds .

 

 

 

Payel is already finding it difficult to manage her present medical expenses which run in to thousands per month. On a regular basis, she is required to take immunosuppressant drugs for her liver etc. She developed multi-drug resistant TB due to a suppressed immune system. Payel said, “My struggle to survive for the past eight years has always been challenging. But with the death of my father >3years ago, things have become tougher. He was my only support in life and his retirement benefits were exhausted on my previous surgeries.”

 

She added, “It is because of my younger brother who has just started his career in cinematography, that I am currently my treatments. Many of his friends, well-wishers have chipped in .

 

The biggest shock came when she was diagnosed with tumours in her liver.

 

She was saved in a first-of-its- kind of surgery, which required Rs 22 lakh. Payel informed that she could manage this surgery through donations.

 

Currently, she is living in a rented accommodation in the city, Payel said that she is waiting for help from good samaritans.  Her attempt to seek aid from the health ministry has not borne any success yet.  She loves life and wants to live it to the fullest. Her  genetic disorder is incurable but not terminal. It can recur, but with right treatment and a balanced lifestyle, it can be checked.

 

 MEDICAL necessity of immune suppression

 

Post transplant, an immuno-suppresive regimen is followed because the genetic structure (DNA Structure) of the transplanted organ is not similar to the genetic structure of the recipeint. So after the transplant, the immune system of recipeint’s body reacts to the new organ as an intruder due to its different generic structure. The whole procedure causes rejection of the new transplated organ. Thus, making it necessary to take medicines which supress the immune system.

 

For further information please contact: [email protected]

 

TO KNOW MORE ABOUT PAYELS CASE  CONTACT — Dr Aditya Gupta ( current doctor) Associate Director Neurosurgery Institute of Neurosciences Medanta Medicity Hospital Gurgaon, India  9871066933

 

Presiding doctors

 

Dr. Sanjiv Saigal Medanta Institute of Digestive & Hepatobiliary Sciences 9811552928

 

Dr. Arvinder Singh Soin Medanta Institute of Liver Transplantation and Regenerative Medicine 9811207735

 

Appeal to support VHL (and MDR-TB) survivor in her own words

 

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.

 

Cyber knife has been performed

 

Surveillance of VHL and MDR TB by imaging, Liver transplant tests, immunosuppressant level tests are of prime importance; can’t be delayed .

 

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.

 

My general Financial condition:

 

1. My Father has left nothing, no repository to carryon my treatment

 

2. We are homeless. I’m living in a crummy rented place with narrow stairs, without ventilation

 

3. Initial support was provided by my friends and well-wishers but I need support on a larger scale due to multiple problems already narrated

 

4. Friends and income of younger brother who is a freelancer can no longer pull the economy of my diseases together

 

 

 

APPEAL
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. I don’t flinch, get fazed 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.

 

I’d rather desire to appeal to the medical community not being attuned to the specialized organ system they are dealing with and its finer tuning, get attuned to the entire syndrome and do some advocacy prioritizing the needs of a rare disease patient who is impatient not to give up.

 

A multidisciplinary approach to screening is emphasized; the team, which is led by a geneticist, includes urologists, gastroenterologists, neurologists, ophthalmologists, and radiologists

 

Regards

 

Payel Bhattacharya 

 

To donate, you can make an online transfer or make a cheque/draft to:

 

 

 

Payel Bhattacharya

 

Bank details:
Name of account holder: Payel Bhattacharya
Bank’s name: ICICI Bank
Account number: 103101510715  
RTGS/ NEFT/ IIFSC code: ICIC0001031
Bank’s address: ICICI Bank, Sector-15, Gurgaon Branch, SC059, 60 Old Judicial Complex, Gurgaon-122001
Swift code: ICICINBBCTS****************************

 

 

 

 

 

 

 

If you would like to send a cheque, please note the spelling; “PAYEL BHATTACHARYA”

 

It can be deposited in the account or despatch courier to:

 

Payel Bhattacharya

 

25/A/3, Gandhi park, First Floor

 

Hauz Rani, Malviya Nagar, New Delhi 110017

 

(Opposite Saket City Hospital)

 

 

 

 

 

Please pass the word around and please share this note if you think its fine.

 

 

 

“NO ONE CAN HELP EVERYONE BUT EVERYONE CAN HELP SOMEONE”

 

 

 

Here is latest poem by Payel

 

 

 

Life is no siesta-chancy business
No place for no-hopers
A game of dice to be faced with a winsome smile
Not loosing track of time ”tick-tock” says the clock, ineluctable in hurrying
Wringing hands-browbeating-defeatist attitude
Actions-reactions-inactions-under actions
There’ll be many blitzkriegs on the way
It’s a big fight to be fought till the end
Give ole’ fear a heave-ho
There’ll be no comeback you shall know
Not knowing what tomorrow holds makes it your day
It’s still your day; you aren’t dead so being combative is the only way
Like a spirited race horse runs with pizzazz on its own accord
Runs with wild enthusiasm, speed which is imperative if encouraged
Obverse and reverse we are the chemical broth of the Cosmos

 

connect with her on facebook here-  https://www.facebook.com/payel.bh

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