A Friend Raises Awareness for Ehlers-Danlos Syndrome Patient


The UK has a great support system for EDS.
Submitted by: Yusra Ilahi
Story Hero: Yusra
Location: Glasgow, United Kingdom
RARE Condition: Ehlers-Danlos Syndrome
Sannah-EDS-Two friends show their support for the patient advocacy foundation, Ehlers-Danlos Support UK.

“Physically Weak But Mentally Stronger,” is the philosophy that helps me live my life.

At the age of four, I was diagnosed with Ehlers-Danlos Syndrome (EDS), type 6A, a rare and genetic condition that affects me every minute of every day, making ALL tasks a struggle. EDS is caused by an alteration in certain genes, resulting in collagen becoming weak, which entails making EDS sufferers generally also very weak and causes many symptoms from subluxations/dislocations, hypermobility, loose skin, poor wound healing, breaking bones with ease and many other symptoms. The medical definition of EDS does not even begin to define how it actually affects a sufferer.

Now at the age of 19, I’ve found that EDS has gradually changed every aspect of my life, and although this is hard to deal with, having my family and friends supporting and caring for me makes things easier. In 2012, I went to a conference, hosted by the charity Ehlers-Danlos Support UK, with my mum and one of my best friends, Sannah Hussain. It’s from this event that we met so many inspirational people, who continue to fight and battle EDS everyday even when there is NO cure. In our eyes, these people are soldiers who have had much harder times than me mainly because they were not diagnosed till much later in life and doctors/medical professionals never took enough time to understand them. What you must remember is that EDS is invisible and people who are affected by it look normal, yet our insides cause us an unbelievable amount of pain everyday.

I believe I am blessed for knowing about my EDS from such an early age and have been able to manage my condition well enough by being careful with everything I do. I’ve known Sannah for eight years, and she has been there step by step, seeing the struggle of my EDS, which is why we want to help make a difference to other sufferers by raising funds for Ehlers-Danlos Support UK. This charity does an excellent job in helping and supporting those with EDS.

Although Sannah has Albinism and many of her own health issues and struggles, she has very kindly offered to run a 10K on 12/05/13 where 100 percent of the donations will be given to the charity (Ehlers-Danlos Support UK). We’ve both been working very hard: Sannah has put all her energy into training, and I’ve been organizing many ways to raise as much awareness/funds as possible. There is a demand to make this condition, a recognized condition and to search for a cure, but until this happens I will always remember that I may be “physically weak” but I am “mentally stronger,” so I will fight for those who haven’t or will not have a chance to live a normal life due to the barriers of Ehlers-Danlos Syndrome.”

Many suffering with Ehlers-Danlos Syndrome  are giving their time to promote EDS Awareness and raise funds for those in need.

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