Update from Mission Arogya/Arogya UDHC Physician Network - Post 2

Once we at Arogya HomeCare (https://www.facebook.com/arogyahomecare), Mission Arogya (https://www.facebook.com/missionarogya) , Kolkata Medical Emergency System (KMES) (https://www.facebook.com/kmes.in) got involved, we have taken it up first to ensure OPTIMAL treatment keeping all logistical and financial constrain in mind.

This is a quick update from Mission Arogya's ArogyaUDHC program - The case has been shared among the ArogyaUDHC network of physicians, which is a global network of > 1500 physicians.(https://www.facebook.com/groups/tabularasa/ : details: http://www.missionarogya.org/p/arogyaudhc.html ). 

According to the Physician group, no clinically approved medication is still available for this rare disease - the disease is rather managed over a long period of time primarily via pain management and occasional surgeries. But the physicians are also of the opinion that for different reasons, "it seems that (care-seeker) has not gone though any long term planned medical treatment / management apart from recurrent surgery."

The treatment should have started long ago (may be from his childhood) under Pediatric Orthopedic to keep this under control. But they also realize that care-seeker is under lots of pain and his left side is getting paralyzed - though as none of them have seen him physically, they cannot understand the severity (May be the latest MRI report will help).

Based on the current MRI, CT and XRAY report done in March 2017, according to the physician network the following are the only two options :

1. If the pain is unbearable and left side continue to deteriorate the only option is to get the operation done ASAP. 

From one physician - 

" It might be a tough operative procedure. Instead of general orthopaedic surgeon he should be operated by  spine surgeon (either orthopaedic or neuro surgeon). INK is best for that in kolkata. I dont know any specialized spine surgeon in Govt domain. U may enquire at Bangur institute of Neurology" 

2.. If care-seeker can withstand the pain, then his treatment should start in the Orthopedic department for long-term management of his disease, preferably in a Tertiary hospital so that a holistic treatment can be done under the same roof most affordably. It has been decided that the best place with be PG Orthopedic Department along with BIN for long term management of this rare disease

But it's also true that care-seeker's condition is deteriorating every day - So while we at Mission Arogya, keep on working on option 2, it seems the operation might be needed to be done in INK, Kolkata ASAP - INK being a private hospital will require 3.5 to 5 lakhs to do the operation. As such we are also sharing the Milaap crowd-funding appeal. https://milaap.org/fundraisers/saverameez

P.S: Few important points to note for transparency :

1. Mission Arogya, Kolkata Medical Emergency System and Services - KMES or Arogya HomeCare (or it's founders) are not financially responsible for this fund raising. We are just sending it to our friends and donors worldwide , so that they can donate to the bank account of care-seeker and his friends/families directly

2. We as an organization, are ensuring the OPTIMAL treatment is being done and the care-seeker get cured quickly and start his PhD work. For our own selfish reason, we need this young scientist to be cured completely, so that he can achieve many things for the betterment of humanity.

3. I personally believe, care-seeker and his well wishers should approach INK and request them on humanitarian ground , to reduce the cost of operation, as I see some areas of fee reduction/waiver. (This is a purely personal opinion and not endorsed by any of my organization, namely Mission Arogya, Arogya HomeCare, KMES , Arogya MedTech, R3G Foundation etc.)