A mother and daughter story

By Sharon and Meg

Parent story – Sharon
The path to diagnosis of an illness can be a long and hard journey particularly when the symptoms lead you to consider something as rare as EDS. It was when Megan was 11 years old that a young, newly qualified Osteopath related Meg’s collapsing ankles, gastrointestinal symptoms and hyper mobile joints to Ehlers Danlos Syndrome. We had never heard of EDS and after doing our own research, it did appear to make sense.
For several years despite asking for a referral from her GP to explore this diagnosis, Meg experienced worsening symptoms, misdiagnosis leading to psychiatric hospital admissions before, at the age of 18 years Megan finally received a diagnosis of Ehlers Danlos Syndrome hypermobility type through a referral to an NHS geneticist. At no time were we able to get a referral to an NHS rheumatologist. During this time. Megan was traumatised, we as her parents were traumatised and her brother Olly who was caught up as the ‘well’ sibling was traumatised.
At this point, we had a diagnosis but no support. We were all bewildered, jaded and still no further forward with helping our poorly child.
Megan used this diagnosis to find support. She asked me to come with her to an EDS UK support group in the nearest town to where we lived. It was here that we met Sarah Steele who was beginning the journey to setting up the support group that we still attend today. Megan and I arrived and sat quietly whilst others shared the story of the path to diagnosis. Parents shared the names of consultant rheumatologists whom they had been able to see privately and understood this seemingly impossible diagnosis.
As a parent, I felt hope in the stories that I heard from other parents that they were able to find enlightened healthcare professionals and took notes so I could contact these same people to help my own daughter. I felt encouraged that we were not alone anymore, Meg was indeed a zebra but no longer in a herd of one. I felt empowered to find the right sort of help and felt blessed in the support of the people in this group who wanted to use their journeys to inspire and teach others through their own lived experience.
Today, we are five years down the road, Megan has seen several consultants named in that support group and can now add MCAS, POTS and a number of other diagnoses to her record. These have helped to stabilise her and understand her body so she can live a life although still challenging, in a more informed way.
Even now we hold the trauma of the mis-diagnosis days and are learning to deal with it. Meg and I still attend meetings and I have used my lived experience to support other carers, my husband Jon has raised funds for EDS UK by taking part in Ride London and my son Olly has graduated university.
I too am now a diagnosed zebra and attend the support group for myself finding support amongst my peers and will continue to do so, supporting and being supported by the wonderful people around me.

Child’s story – Megan
My diagnosis of Ehlers Danlos Syndrome changed my life. It opened many doors for me, from further diagnosis and treatment, to meeting new friends through support groups. After a particularly difficult year of being ignored and constantly being told I was making everything up for attention, I came out of that year with a constant feeling of being an imposter and lost all my trust in the health care system. It wasn’t until my diagnosis came that the relief set in that I had the answers for something that had been affecting me my whole life. Though diagnosis was helpful, it unfortunately led to more question that were unlikely to be answered.
We are told not to google symptoms, but it felt like my only option, and I’m glad I did. Without this I would never of found the support that has made the biggest change. The online search led to the EDS UK website and then to the Facebook support group. With the nearest support group to me being around hour away, we reached out to the group for support and to meet someone in the group who was trying to set something up closer. We jumped at the opportunity to start exploring these options more.
Sarah and I met, with my mum coming along for support, we had a brilliant and fulfilling first meeting. From there the Market Harborough and Draughton group began. Meeting and listening to other people’s stories about their diagnosis of both EDS and the co-morbidities that commonly come with it, we started to learn about what available support was out there. We began creating our own list of doctors with an understanding of EDS and how they could support us. Coming out of this first meeting had changed my perspective of what life could be and all the possibilities that could be out there for me.
Having the opportunity to discuss, listen, and vent if needed, has made a huge difference to both my physical and mental wellbeing. I didn’t realise the support you can receive from just being in this environment. Being able to now share my story with others and give others the support back in a way I have received is, and continues to be, very rewarding.