Rare Disease Day 2016


Please visit http://www.rarediseaseday.org/ for more information on Rare Disease Day.

Rare Diseases umbrella organizations in India are:

Indian Organization for Rare Diseases (IORD)
Plot 397, #22b
Jubilee Hills, Hyderabad 500033, India
Web: http://www.i-ord.org

Organization for Rare Diseases India (ORDI)
Phone: +91 8892 555 000 - Rare Disease Care Center
Email: contactus@ordindia.org
Web: http://www.ordindia.org

Foundation for Research on Rare Diseases and Disorders
C252 Kandasamy Salai
Periyar Nagar, Chennai 600 082, India
Email: contact@rarediseasesindia.org
Web: http://www.rarediseasesindia.org

IF YOU CAN'T CONNECT THE ISSUES, THINK CONNECTIVE TISSUES!

If you can't connect the issues, think connective tissues! 

Connecting the dots between Ehlers-Danlos Syndrome and related conditions. 






This presentation  by Dr. Heidi Collins is a must read for anyone wanting to know more about Ehlers-Danlos Syndrome. 

In particular, it has information on:
  1. What is connective tissue.
  2. How EDS differs from auto-immune connective tissue diseases (like SLE).
  3. The heterogeneous and multisystemic presentation of EDS.
  4. How EDS-HT is more than just hypermobility.
  5. The controversies and lack of awareness in medical community about EDS. 

Key Takeaways:

NO TWO ZEBRAS HAVE THE SAME STRIPES  
Heterogeneity of EDS — and heterogeneity of people in general — ultimately leads to:
• a broad spectrum of clinical presentations
• widely variable disease progressions
• treatments varying in efficacy from person to person
"Penetrance is believed to be 100%, although expressivity is extremely variable, and careful examination may be required to demonstrate typical features, especially in adult men who have never experienced a major joint complication or significant pain." (Levy HP. Ehlers-Danlos syndrome, hypermobility type. In: Pagon RA, Bird TD, Dolan CR, Stephens K, Adam MP, editors. GeneReviews. Seattle, Wash, USA: University of Washington; 2010.)




Link: Hypermobility Syndrome For Physiotherapy Professionals

Two excellent articles for physiotherapy professionals on hypermobility syndrome and how to manage patients who have this condition are here:

Hypermobility Syndrome Part-1

Hypermobility Syndrome Part-2 

(Written by Health Williams)

If you are unable to view both the links open in your browser (asking you to create and account in order to view a second article), try opening the links in two different browsers.

The second article enumerates a very extensive list of exercises and approaches for different joints and body parts depending on the problems the patient faces.