My name is Claire Healey and on September 1st, I will ride my motorcycle around Australia to raise not only awareness but also to raise funds for ConnecTeD Foundation, who support people like myself with connective tissue disorders.
I suffer from a genetic condition called Ehlers-Danlos Syndrome ('EDS'). It is a debilitating connective tissue disorder that affects my entire body. EDS commonly affects joints, ligaments, tendons, cartilage, muscles, skin, blood vessels, organs and the viscera that surround them. The severity of EDS varies between individuals. In my case, EDS has resulted in literally thousands of joint dislocations, 7x Shoulder Reconstructions, 2x Nerve Transpositions, 1x Elbow reconstruction to name a few. Due to my joints constantly dislocating, I suffer from chronic pain and fatigue. On average, I have a major joint reconstruction every 12 months. This provides me with a short period of mobility and quality of life. Other individuals with the condition are frequently wheelchair bound and less mobile than myself.
I have three goals for the ride:
1. Raise money to assist the funding required for the establishment of an adult connective tissue displaysia unit at Westmead Hospital as well as funds for research grants, diagnostic services, equipment and education seminars for medical professionals.
Increase public awareness of Connective Tissue Disorders / EDS;
Inspire others with Connective Tissue Disorders with the message that you can do anything in life despite having CTD / EDS – you just have to plan the approach more than the average person!
The ride will actively engage the community, raising awareness of over 600 debilitating Connective Tissue Disorders and will raise much needed money for ConnecTeD Foundation who assist in funding a “one of a kind” Connective Tissue Dysplasia (CTD) Clinic at Westmead Children’s Hospital.
The clinic has been tirelessly responding to the medical needs of children for the past 27 years providing diagnostic and treatment facilities such as intensive physiotherapy occupational therapy programs, a specialised orthopedic service, pain management and psychological support.
One of the wishes of the ConnecTeD Foundation, is to help provide a critically needed transition service for children (who are now young adults) that have benefited from the collaborative efforts of medical staff at the Connective Tissue Dysplasia (CTD) clinic. Without a transitional clinic, these Children struggle in a mostly un-supported and confusing world of adult health. One of the key objectives of this transition clinic is to ensure that the adolescent child/young adult with these rare conditions continue to have access to ongoing treatment and psychological support. There is a severe lack of services, support and funding to assist the children moving from the paediatric clinic into the adult world of medicine and it is hoped that through fundraising over the coming years that a transition clinic / adult clinic can be established for those with Connective Tissue Displaysia.
You can follow the ride via the website (www.edsrider.com) and the facebook page (facebook.com/edsrider).
Thanks for your support and for making a difference to those with Connective Tissue Disorders.