Rare Disease Day 2016

Today is Rare Disease Day. Rare diseases are defined by most organizations as those diseases that have a low prevalence. While EDS-HT is considered a rare disease, there are many recent studies that suggest a higher prevalence of this condition and possibility of a spectrum of severity leading to heterogeneous presentation making diagnosis difficult. It is possible that the disease process underlying the joint hypermobility syndrome and EDS-HT are same or related. Unless there is more awareness about this disease among people and the medical community, diagnosis and research into pathogenesis and management will not attract attention or funding. This ignorance hides underneath considerable morbidity – undiagnosed and untreated.

To me, the list of rare diseases is not important, the mind-set is. The willingness and humility to accept that our finite knowledge is limited, and there are diseases and anomalous presentations that result in lack of diagnosis or delayed diagnosis. Medical help is a part of social justice and like legal justice, a diagnosis delayed is a diagnosis denied. “It is all in your mind” must not be a default response or even a thought not spoken out aloud.

Please visit http://ift.tt/wjKoMz 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://ift.tt/1OEYid1

from Blogger http://ift.tt/1OEYh8Z


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.
This entry was posted in Awareness and tagged , , , , , , , . Bookmark the permalink.

Share your thoughts

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s