Is There a Caste System Among Diseases?
Power groups achieve a lot by advocacy and by collective bargaining. There are any number of organizations fighting for people with cancer or with HIV. Government programs in many countries support their treatment.
But if you have the bad luck to have an uncommon disease? Like Rahmath with systemic sclerosis, whom we blogged about a while back, no one wants you!
The USA’s National Institutes of Health (NIH) lists more than 6000 such uncommon diseases, and there are millions of people with such diseases.
At least that used to be the case… We are very very happy indeed to hear about the National Organization for Rare Diseases (NORD) in USA. Pallium India’s friend Dianne Gray, who lost her son to such a disease, is involved with this organization. A report from thesurvivorsclub.org, below.
May this lead to global action!
Dianne Gray’ son Austin was 4 years old when he lost his vision and started falling. He was subsequently diagnosed with neurodegenerative brain iron accumulation, a rare disease which eventually killed him at the age of 14. However, the family’s often frustrating struggle to provide him with comfort and relief has spurred Gray to help other families dealing with un-researched conditions, according to ABC News.
Recalling the obstacles she and Austin faced in order to obtain the right diagnosis, treatment and support, Gray told the news provider about the helplessness she felt when doctors were not able to treat her son, or even alleviate his pain.
That is what inspired her to become involved with the National Organization for Rare Diseases (NORD), which sponsored the second annual National Rare Disease Day last Sunday.
NORD serves as a liaison for researchers and families coping with rare diseases, offering patient assistance programs and networking opportunities. It also collects donations as funding is among the most important obstacles to fighting these types of disorders.
According to the National Institutes of Health, there are more than 6,000 rare diseases affecting approximately 25 million Americans.