Rare Blood Disorders In India: How It Can Lead To Disabilities In People Expert Explains | TheHealthSite. – TheHealthSite

By daniellenierenberg

On International Day of Disabled Persons, TheHealthSite spoke to Dr. Sunil Bhat, Director and Clinical Lead, Pediatric Hematology, Oncology, and Blood & Marrow Transplantation, Mazumdar Shaw Cancer Centre, Narayana Health City, to discuss the condition and understand the ways one can manage it.

Written by Satata Karmakar | Updated : December 3, 2021 5:31 PM IST

3rd December every year is observed as UN-designated International Day for persons with disabilities. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities. This year's theme is "not all disabilities are visible" since some of the disabilities are non-visible but they cause significant challenges for people living with such conditions for day-to-day participation in society.

Such non-visible disabilities include some of the rare blood disorders such as Thalassemia, Aplastic Anemia, Sickle cell Anemia, Fanconi Anemia, Hemophilia, and so on. The Rights of People with Disability Bill passed by the Parliament of India in December 2016 included newer disabilities like blood disorders sickle cell anemia, thalassemia, and hemophilia. Today, on International Day of Disabled Persons, TheHealthSite spoke to Dr. Sunil Bhat, Director and Clinical Lead, Pediatric Hematology, Oncology, and Blood & Marrow Transplantation, Mazumdar Shaw Cancer Centre, Narayana Health City, to discuss the condition and understand the ways one can manage it.

In India, the burden of blood disorders and blood cancer is huge. India is even called as Thalassemia capital of the world with over 10,000 new cases every year. Thalassemia is a disabling condition not just because of chronic anemia but other co-morbidities like organ damage, bone damage, and cardiac complications.

People with thalassemia may need lifelong blood transfusions and other therapies (like iron removal medications). With the advances in the medical field, blood stem cell transplant plays an important role in the treatment of various blood disorders like thalassemia, aplastic anemia, and blood cancers as well. For a blood stem cell transplant to be deemed successful, the human leukocyte antigens (HLA) of the donor should match the antigens present in the cells of the patient. Only 30% of the patients find a matching donor in the family and the rest 70% depending on an unrelated donor. Such unrelated donors are being registered by stem cell registries like DKMS BMST Foundation India.

However, despite such a huge disease burden, Indian stem cell donors only form a tiny fraction, about 0.04% of the total listed unrelated donors globally. The main reason is the lack of awareness and prevailing myths around the stem cell donation process deny many patients a second chance at their lives in the country. It is high time that healthy people understand blood stem cell donation is a safe process and come forward to register as a donor. There is only a 1 in a million chance that someone comes as a match for a patient!