I read an article by Jan Groh, EDS patient & support group leader at http://www.chronicpainpartners.com/what-is-eds/
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 :
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 which translates to
1,00,00,000 to 20,00,000 (1 Crores to 20 Lakhs)
 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.