Directory of Experts

(Page will be updated regularly)

The individuals/ groups/ hospitals mentioned below are proficient in/ equipped to treat JHS/H-EDS patients. I do not know these people personally or have access to these people or places, but I hope this list may be of help to someone someday.

India

I am continuously trying to contact/find more physicians and medical professionals who are treating H-EDS/JHS patients, and as and when I receive replies from these people, I will put up their names on this list. If you are an Indian medical professional and are interested in treating H-EDS/JHS patients, please write to me using the contact form on the left sidebar.

1. Dr Yathish GC
Consultant Rheumatologist
Columbia Asia Hospital - Whitefield
Bangalore East Taluk 560066
Phone: +91 80 6165 6666
email: yatish.gc@columbiaasia.com


2. Dr Raju Khubchandani
Director of Pediatrics and in-charge Ped Rheumatology Clinic,
Jaslok Hospital and Research Center
http://jaslokhospital.net/DR-KHUBCHANDANI--RAJU--P/FAD-131
and
Consultant Pediatrician,
Breach Candy Hospital, Mumbai
http://www.breachcandyhospital.org/doctors.html

3. Dr. Kavita Krishna
Professor, Dept. of Medicine,
Bharati Medical College and Bharati Hospital,
Pune
http://mcpune.bharatividyapeeth.edu/Contact-Us/default.aspx

4. Vandana Sethi (Physiotherapist)
Director of Phyworld,
New Delhi
www.phyworld.in

5. Dr. Able Lawrence
Rheumatologist and Clinical Immunologist
Additional Professor, Clinical Immunology,
SGPGI Lucknow



International 

United Kingdom

1. Hospital of St John and St Elizabeth 
60 Grove End Road
London NW8 9NH

Prof. Rodney Grahame
Dr. Alan J Hakim
and their teams

See also
https://www.ucl.ac.uk/rheumatology-bloomsbury
Centre for Rheumatology
UCL Division of Medicine
Rayne Building
5 University Street, London WC1E 6JF


Chile

Prof. Jaime F. Bravo MD
Rheumatology department. Hospital San Juan de Dios Office: Luis Thayer Ojeda 0115, Of. 303, Santiago, Chile
http://www.reumatologia-dr-bravo.cl/INDEX_ENG.html



USA

1. Dr. Brad T. Tinkle
Medical Director of Clinical Genetics at Advocate Children’s Hospital in Chicagoland
http://drbradtinkle.com/

2. Dr. Heidi Collins
Physical medicine and rehabilitation
https://beaconhealthsystem.org/medical-group/providers/heidi-collins-md

3. Dr. Alan Pocinki
Internal Medicine Specialist
http://www.alanpocinkimd.com/p3.html

4. Dr. Clair A. Francomano
Clinical Molecular Genetics Facility, Greater Baltimore Medical Center
http://www.gbmc.org/body.cfm?id=38&action=detail&ref=542

5. Dr. Derek Neilson
Asst. Professor, UC Dept of Pediatrics
http://www.cincinnatichildrens.org/bio/N/derek-neilson/

6. Dr. Diana Lebron
Pediatric Neurologist
Texas Children’s Hospital
http://www.texaschildrens.org/Locate/Doctors/Lebron,-Diana/

7. Dr. Howard R. Epps,
Assistant Chief of Orthopaedic Surgery
Texas Children’s Hospital
http://www.texaschildrens.org/Locate/Doctors/Epps,-Howard/

8. Dr. Howard Bird
Clinical Pharmacologist
https://www.leeds.ac.uk/medicine/FASTER/people.htm



Spain

1. Dr. Antonio Bulbena
Psychiatrist, Neurogenetics and Epidemiology of Anxiety Disorders,
School of Medicine
Autonomous University of Barcelona
http://dpsiquiatria.uab.cat/en/grupRecerca_5.php

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During my research and endeavor to contact doctors who are familiar with JHS/H-EDS, I found that there are only a handful of experts around the world who have expertise in this condition. And these few experts seem to be passionate about their work and are doing not just prolific research but also spreading awareness about JHS/H-EDS. These are the people who have realized the enormity of the underdiagnosis that exists currently and seek to address the disbelief we see in doctors -

"Surely, if it is that prevalent, I would have read about it in my books" 
"EDS, whatever type, is a rare disease." 
"It does not exist, at least not in India. I have never heard of it. It is not a health problem here." 
"Are you sure you have been told that your spinal problems are due to hypermobility syndrome? It is very rare and it rarely causes any serious morbidity." (A rheumatologist from Bangalore) 
"Thank you for the printout! Wow, sure, I will take a look at it!" (Never heard from them again)

Three years after diagnosis, I can say that none of my close friends who are doctors have yet read up on the new updates on EDS. They would definitely read up on it if it was someone from their family who got the diagnosis. Therefore, I truly believe that spreading awareness about the updates on this disease, its widespread prevalence and seriousness of the under-diagnosis, and how this disease hides in plain sight disguised as multiple unrelated diagnoses, is crucial.

Considerable work has been done by Dr. R. Grahame from the UK and his group during the past three decades. I imagine that it is due to the sheer volume of his work and constant advocacy, the field of "hypermobility syndrome" has acquired a "mature" status in the UK (enough to warrant "Are we overdiagnosing" talks). Getting timely diagnosis in the UK appears to have become the norm; getting amazingly effective and scientifically advanced physiotherapy is possible (including special programs for kids); and finding good community support, even if online, is effortless.

Similarly, I have come in contact with Dr. J. Bravo from Chile, who is an expert on JHS/H-EDS and has been actively involved in disseminating information about this condition.

A few very good reads are his articles:
When to suspect JHS (for doctors)
Joint hypermobility syndrome: the most frequent cause of pain in rheumatological practice?

I wish to express my gratitude to Dr. Yatish GC, for his immense support and encouragement in making this page and this website.  His article "Benign joint Hypermobility Syndrome – not so ‘Benign'" IJRCI. 2015;2(1):CS4 can be found among his contributions on his research profile