Tuesday, July 19, 2011

I ♥ Prof. Rodney Grahame

Back in 2006 after years of dealing with chronic pain and was diagnosed Fibromyalgia in the previous year, the RSI on my right wrist/thumb was at the worst, I needed weekly physiotherapy on my hand and I couldnt type/write for a long period. At that time my RSI therapist said there was nothing more he could do because I was too mobile. My joints are abnormally mobile.

So I turned to GoogleGod. He told me about Hypermobility Syndrome Association, Ehler-Danlos syndrome (EDS), and the likes. I learnt about Prof Grahame in those forums. I started reading his papers and articles. He talked about Hypermobility Syndrome aka. Hypermobility-EDS.

Nothing confirmed yet, but things started to fall into its places.

Somehow I got hold of his email address and I emailed him, asking his opinions and suggestions. He basically agreed with my hypothesis of what I have based on the fact that I scored 6 out of 9 in Brighton Criteria. He told me that there is only one expert in the Netherlands and gave me his name & house address which was in the same city as mine.

After getting a referral letter from my GP, I went to see the guy in Gouda where he worked. I went there twice before he sent his diagnosis to both my GP and a specialist physiotherapist he referred me to. I have Hypermobility Syndrome (HMS).

All these time, people said I was hypochondriac, that it was between my ears. Those people need to read this paper:

Patients with HMS often have complaints that are frequently diffuse, chronic, and inconsistent with observed pathology. These individuals may be improperly identified as having hypochondria, as malingering, or as having nonspecific chronic pain, without further investigation into the source of their complaints. Individuals with HMS may not get a diagnosis, or they might be misdiagnosed. Failure to recognize the underlying HMS may lead to unnecessary or inappropriate diagnostic studies, surgical procedures, and patient management, especially for children.

I am forever indebted to Prof G. Even though I've never met him in person, he showed me the light in the end of the tunnel. Following my diagnosis, I did what ever I need to do to 'cure' the RSI, and made peace with Hypermobility. I still have the occasional dislocations. But now I know that during that time of the month where I am even more prone to dislocating myself, I need to take my time moving my limbs.

The sad thing about having this syndrome in Indonesia is nobody really understand and bother to learn about it. There is no HMS expert in ASEAN Region! Part of it because most Asian are more flexible than European, plus HMS is not a life threatening syndrome therefore, I guess, it's not 'sexy enough'. After I bought & read Prof G's book for my dad, he told me that in his career he only saw less than 10 cases of Ehler-Danlos and none of them the Hypermobility type. After he read the book, he agreed with me that I have it from my mom's side. My brother also has dislocating problem with his jaw, but he's not as flexible in his limb as I am. However, I remember flexing his flexible outer ears when we were kids.

I was hoping that my dad could teach his students back then. Now I cant even find that book in his office/home. I wonder if he lent it to someone? Seems like I need to get another book of Prof Grahame to teach my doctors over here about HMS.

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