"It is health that is real wealth and not pieces of gold and silver". – Mohandas Gandhi

Thursday, February 28, 2013

Rare Disease Day | Bringing Awareness to Transverse Myelitis

Today, February 28th, is Rare Disease Day, and a much needed opportunity to host events and share stories that bring awareness to lives touched by rare disease. This year's awareness-raising activities converge around the slogan “Rare Disorders without Borders”.

Bringing Awareness to Transverse Myelitis (TM)

Transverse myelitis is a rare inflammatory disease causing injury to the spinal cord. My mom, Jan, experienced the onset of this neuro-immunologic disorder in March of 2011, and became paralyzed from the waist down (T7). While she has done an amazing job rebuilding her life and rebuilding her strength, she has yet to recover any sensation or motor use of her legs.

TM has a conservatively estimated incidence of between 1 and 8 new cases per million per year, or approximately 1400 new cases each year. Although this disease affects people of all ages, with a range of six months to 88 years, there are bimodal peaks between the ages of 10 to 19 years and 30 to 39 years.  In addition, approximately 25% of cases are in children. There is no gender or familial association with TM.  In 75-90% of cases TM is monophasic, yet a small percentage experience recurrent disease especially if there is a predisposing underlying illness. -Myelitis.org

Jan Allmon at Kennedy Krieger Institute
Jan Allmon | Physical Therapy Rehabilitation at Kennedy Krieger Institute

Particpate in the conversation on Rare Disease Day’s Social Media

My mom is doing such an amazing job keeping her spirits high and working hard to keep her body strong, despite transverse myelitis. Please take a moment to recognize her and learn about others who are suffering from a rare disease. 

facebook rarediseaseday 2013facebook.com/rarediseaseday ‘Like’ the RDD Facebook page, view our timeline and participate in the conversation on Rare Disease Day

twitter rarediseaseday 2013twitter.com/rarediseaseday Follow Rare Disease Day on Twitter (@rarediseaseday). Re-tweet us and use the hashtag #raredisease

youtube rarediseaseday 2013 youtube.com/rarediseaseday Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel via rarediseaseday.org

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More About Transverse Myelitis

Transverse Myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.