A small session on Huntington Disease was organized by Dr. Nayana Shah who is one of the board of director of Huntington Disease Society of India (HDSI) on 13th August 2019 at Crowne Plaza, Ahmedabad.
The guest speakers were Mr. Svain Olaf who is the President of International Huntington Association and Ms. Astri Arnesan who is the president of European Huntington Association.
The focus of the session was to create awareness about Huntington Disease in India and the session was graced by Neurologists and family members of the patients suffering from Huntington.
Sharing few excerpts of the session for all of you:
Mr. Svein Olaf

It is a family disease and it take 7 years for the patient to come to the doctor with its symptoms.
There are so many researches happening in the world to slower the progress of Huntington disease.
It is very much necessary for the people suffering from Huntington to get together and met as a family and talk about the disease.

Ms. Astri Arnesan

It is a neurological and complex disease which requires diagnosis.
It is genetic and the patient needs to know that it is a family disease.
There are interventions like physical, sleep etc. which are required to improve the life of Huntington patients.
It also has psychiatric symptoms in all the patients and depression is common in them which needs to be treated.
There are few big pharmaceutical companies who are researching in the field to find cure of this disease and the days are not far where atleast the process of rapid progress in Huntington is slowed.

Dr. Nayana Shah

There is an emotional stigma around the disease and many people are not ready to deal with it. The family members feel ashamed about the movement and behaviour of the patient.

Dr. Shalin Shah, Dr, Arvind Sharma and Dr. Swati Shah (Neurologists)

Many people cannot afford to go for the check up and to come for the medication and since there is no cure available as of now, people don’t want to spend money for something which will bring no change in their life.
There is no bridge between a patient and a doctor as there are no counselors available to guide the patients about the disease.
HDSI can help in collecting the newsletters/research to the doctors, they can provide it to the patients and try to help them.

Family Members

There were questions from the family members which Ms. Astri & Mr. Svein answered significantly.
Questions by the family:
What is the meaning of cure in Huntington?
What is the age when a patient can start the treatment?
What to do to control mind and body?