Is Ehlers-Danlos Syndrome rare – or just rarely diagnosed?

Is Ehlers-Danlos Syndrome rare – or just rarely diagnosed? 

I read an article by  Jan Groh, EDS patient & support group leader at http://www.chronicpainpartners.com/what-is-eds/
An excerpt:

Only 5% of Ehlers-Danlos Syndrome (EDS) sufferers are correctly diagnosed*. 

It’s been estimated that EDS affects more than 1 in 5,000 people worldwide. But, experts think that’s conservative. Each year in the US, 650,000* additional sufferers are un-diagnosed or misdiagnosed due to physician oversight or lack of knowledge about EDS.
(*Estimate is according to a study in the UK by Dr. Rodney Grahame.)

This led to ask, what exactly is the number of people who might be affected with Ehlers Danlos Syndrome Hypermobility Type (H-EDS) in India?

Dr. Marco Castori writes [1]:

The epidemiology of JHS/EDS-HT has not been properly established. Literature defines EDS a rare disease with a cumulative frequency of 1/5,000 [Steinmann et al., 2002], with JHS/EDS-HT, EDS classic, and vascular types being the most common forms of EDS. Nevertheless, clinical practice suggests a much higher prevalence of JHS/EDS-HT with a proposed frequency of 0.75–2% in the general population [Hakim and Sahota, 2006]. Hence, the real prevalence of JHS/EDS-HT is unknown but likely ranges from ~ 1% to 1/5,000.

 

With our population of over a billion, and Indians known to having a higher prevalence rate than caucasians, what do you think is the number of people affected in India?

According to the range proposed by Dr. Castori, the number of H-EDS/JHS patients in India is  

1,00,00,000 to 2,00,000 (1 Crores to 2 Lakhs) 

According to Dr. Derek Neilson, the incidence of EDS-HT or H-EDS is closer to 1/100 to 1/500 [2]which translates to 

1,00,00,000 to 20,00,000 (1 Crores to 20 Lakhs)

 
~~~~~~~~~~~~~~~~~

Reference

[1] Castori, Marco, et al. “Re‐writing the natural history of pain and related symptoms in the joint hypermobility syndrome/Ehlers–Danlos syndrome, hypermobility type.” American Journal of Medical Genetics Part A 161.12 (2013): 2989-3004.
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About Hypermobility Syndrome India/Viv

I an an Indian woman with Ehlers Danlos Syndrome Hypermobility Type (EDS-HT), also known as joint hypermobility syndrome. Although I have "suffered" from this disease all my life, I was diagnosed at 38 years, 2 years after my child was born. My work mainly involves being a mom to my beautiful and compassionate child. I also write and work from home in the field of science. I aim to raise awareness about EDS-HT, chronic pain, invisible illnesses, mental illnesses and invisible disabilities through my blogs. Viv (Latin root, meaning Life/ Alive) is my blogging pseudonym and alludes to my continued endeavor to rediscover my life and its meaning.
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