Linda's Story
My name is Linda Coleing and I was diagnosed with vascular Ehlers Danlos syndrome in 2022 at the age of 69. I had symptoms that were unexplained all of my life from the age of 3 which involved heavy bleeding, nosebleeds and easy bruising. Other family members, notably my mother and grandmother had similar symptoms. A common factor for my mother and myself was that we both had red hair so I grew up thinking this was normal for people with red hair.
The nosebleeds grew worse as I got older and became quite a problem. During the Covid lockdown in 2021, I was given a phone appointment with a haematologist at Royal Stoke hospital which led to a referral to the EDS clinic at Sheffield from whom I received a diagnosis in March 2022. Further investigations involving biopsies led to my current diagnosis. I am currently the only person in the world with my particular variant of the gene sequence in the COL3A1 gene.
I was given excellent support and genetic counselling by the EDS team in Sheffield. I was advised to join Annabelle’s Challenge which continues to be an incredibly supportive and positive experience. I am looking forward to my first local peer group support meeting organised by Annabelle’s Challenge shortly.
I heard by chance on my local radio station about a Rare Diseases Conference on Living Well at Stoke Town Hall. I decided that I would fit the bill given the unique nature of my variant and filled out an online form for a ticket for myself and my husband. I felt some trepidation as it would be my first experience of such a gathering. On the day I donned my Annabelle’s Challenge T shirt and set off. I would encourage anyone to take a step like this as it was an incredibly uplifting and inspiring experience. It was very well organised with a ‘helper’ on each table identified by a coloured badge.
There was a good balance of professional speakers and people with lived experience of a rare disease. The programme was inspiring and enlightening, and often funny which I hadn’t been expecting. I hadn’t known anything about the Equalities Act which applies in the UK requiring “reasonable adjustments” to be made to enable those with disabilities to work, join in social activities and live a full life. It is actually illegal in the UK not to do so. I particularly liked the speaker commenting that it was the sign of a healthy society to cater for the needs of all its citizens. I have certainly restricted my life since diagnosis as I didn’t want to inconvenience people. I intend to change this attitude now!
Love and Light from Linda x
