I have Ehlers Danlos Syndrome Hypermobility Type (EDS-HT or H-EDS), aka joint hypermobility syndrome (JHS), aka hypermobility syndrome (HMS). Whatever the name, the underlying problem is that my body makes a certain protein defectively, one that is the most abundant protein in the body. Such an important building block of the body being defective leads to problems in almost all the organ systems, but especially so in the musculoskeletal system.
I got my diagnosis very late, in my late thirties. By that time, I had already lost too many things of my life and health. Even after getting the diagnosis, I did not get any support or link to resources from my rheumatologist, although we were in an European country. She told me vaguely that I have hypermobility of joints and with age my joints will become stiff and I will feel better. As my research showed me afterwards, her advice was inadequate and misleading.
In the year that followed, during my research, I found a lot of useful information and supportive content on websites and medical journals, and through private communications with researchers. The first time I read an Narrative Medical article, “Living with the hypermobility syndrome” by Sarah Gurley Green, I cried for hours. I have been able to find the strength and information to deal with my condition, disabilities and life only from the various resources on the net.
Three years after my diagnosis, I still do not have access to rheumatologists or physiotherapists due to many personal and family constraints. However, I found many good resources on the internet with the help of which I was able to improve my health situation.
Apart from EDS-HT or H-EDS that causes multiple joint, muscle, ligament and soft tissue problems, I have mutisystem problems as a result of it like dysautonomia, gastrointestinal and immunological issues; I also have autistic traits, anxiety disorder, some neurological issues and SAD. I think there are many people with H-EDS who have concurrent issues like this.
In conditions where correct approach is not adopted by medical professionals and the proper management not offered to patients, it becomes important for patients to educate themselves and be their own advocates. A person can play a more pivotal role in their diagnosis and management if they can get the proper information. In India, where language, education and internet access are insurmountable obstacles to such self-advocacy success stories, I believe spreading the awareness among doctors is more important. I hope my blog will reach some people with JHS/HEDS and some doctors treating people with pain or other symptoms arising from JHS/HEDS. The internet is a platform where I can do my bit to light more candles with the flame I have found.
Share because you care
I have started this blog as a place where I will share my personal experiences with hypermobility syndrome and the experiences of other people I know who have this condition. Links to good resources and reviews of good books that I found helpful. The day to day challenges, the tips and tricks that worked, occasional rants, treatment experiences… anything and everything related to life with this condition. I have myself sought and benefited from these things on the net, and assume there are more people looking for them.
My research has also led me to believe that Indian orthopedists and even rheumatologists are not at all familiar with the updated knowledge base about this condition. They are still familiar with only the two extremes: the outdated term “benign joint hypermobility syndrome” and the “EDS-III” with dislocations.
I hope my writing will contribute to raising awareness about this invisible illness and in a few years the sheer size of the internet presence of JHS/HEDS community – the millions of people with this condition talking about it, will propel doctors to take notice and medical education to be revised in this context.
If you have this condition, no matter where you are from, I welcome you to share your story and your experiences in the comments or by email and experiences so that it may benefit someone else. Please send your email to jhs(dot)heds(dot)india(@)gmail(dot)com.
Thank you for visiting this blog.