#Timet to Diagnosis...
May is EDS Awareness month. To help raise awareness of the Ehlers-Danlos syndromes and hypermobility spectrum disorders, I was asked to highlight how long it took to get my diagnosis; 3 YEARS since my neurologist mentioned EDS for the first time but misdiagnosed for 12 YEARS.
Typically people wait years or decades for an EDS diagnosis, if they get one at all or find a doctor who can give a diagnosis. Many with EDS would also argue that diagnosis is important for psychological reasons, encouraging motivation and acceptance. Most would agree that it’s easier to tackle something when you know what you’re dealing with. In the light of May being EDS Awareness month, I want to take a moment and share my story in a nutshel to all the newbies on my blog and introduce you to the wonderful Professor Ian Chikanza who diagnosed me.
For decades my physiotherapists told me that I am hypermobile and have clicking joints. Being very flexible as a kid worked in my favour when playing sport but in my 30's my muscles started aching, my joints were in constant pain and the bruising on my body became more noticeable. At a young age the discomfort of my toe dislocating and correcting itself while playing sport became normal. At the age of 12 I was told I had low blood pressure and was prescribed medication to help with my iron levels and constant dizzy spells, but fast forward 30 years and I am diagnosed with EDS and POTS (Postural Orthostatic Tachycardia Syndrome).
During my pregnancy aged 32, all my symptoms went into overdrive. My joints were in constant pain. Because of my hypermobility I injured myself while giving birth. I incurred two labral tears (one in each hip). Over the next 10 years my dizzy spells increased rapidly and there were days when walking was a goal as my muscles became stiff and joint pain was constant. With a new born baby, my wrist was in a wrist guard and I was told it was just a strained muscle… then my elbow, knee … bladder issues … then L4 and L5 showed degenerated discs in my back etc. etc. The list goes on. Something was up!
The most painful thing for me was not the fact that I was in constant pain, but the fact that I couldn’t sit down on the floor and build Lego with my son or run outside kicking the ball with him, and I don’t know why I feel this way. This could not be normal – I was never like this! From one specialist to the next, one rheumatologist to the other. The whole time being missed-diagnosed. Oh, I’ve been told many things by so many doctors. Three years ago, I had a spontaneous VAD (Vertebral Artery Dissection). I was a high risk for stroke. It was the first time when my neurologist asked if I had heard of Ehlers-Danlos Syndrome, but I couldn’t pursue genetic tests as it was over £1000 so I left it there. My VAD healed within eight months. Since then I have started reading up about Ehlers-Danlos Syndrome and I was able to connect a lot of dots throughout my life. Things started adding up. Last year in June I suffered another spontaneous VAD just higher up in my neck - again, high risk for stroke. It was then that we started looking into genetic testing. (I still have a vEDS (vascular) genetic test pending at this moment.) After 3 years of research and 12 years of miss- diagnosis, tons of MRI’s and x-rays, (clearly a lack of awareness and knowledge of what EDS is amongst doctors and rheumatologists), I stumbled upon a chat room where other people with EDS where discussing their diagnosis.
After a very long time of feeling hopeless and frustrated, I got the telephone number of the Hypermobility Clinic in London and that is where I met the wonderful Professor Ian Chikanza who trained under Professor Rodney Grahame (a pioneer in hypermobility and heritable disorders of connective tissue diseases spectrum) and worked and collaborated with him over 30 years.
The day I met Prof Chikanza was the day I was finally able to put a face to my invisible illness. For so long I knew something was up and he was so thorough and understanding – a Rheumatologist who knows my daily struggles- and it is not all in my head! Please find doctor Chikanza’s details below to book an appointment at the NEW International Arthritis & Hypermobility Centre.
Although EDS doesn't define me, it is integral to the way in which I live my life. I will face Everest Base Camp with challenges like inflamed joints, muscle pain and an unreliable bladder, dizziness, lack of sleep and a heart that runs away with me. It has always been my dream to climb to Everest Base Camp to see Mt Everest with my own eyes, and those who know me well, know that I love a challenge. I love LIFE – even with my diagnoses. I’m 41, a mother of a 10-year-old and I’m married to my best friend. But before I am a mum and wife, I'm ME, so I am procrastinating no more and have started my journey to fulfilling a lifelong dream .... with my EDS and with my POTS.
In October 2019, in aid of my own personal dream and in the process, raising awareness for EDS Support UK, I will trek for 15 days across the Khumbu Valley, taking me to the foot of Mt Everest where I’ll reach Everest’s Base Camp. The route will start with a 30-minute flight to Lukla, the world’s most dangerous airport. From there it will be breath-taking views, burning muscles, climb to an altitude of 5,643m, and a bucket load of endurance. With no guarantee of how my body will react, I will push myself to the limit. Fear or Faith - I choose Faith!
I want to give hope to the tons of zebras out there with EDS who gave up because of their disability and decades of miss diagnosis or a lack thereof, who like me was afraid to fight back– but also to people out there who gave up on themselves because doctors did. I made a decision in October 2018 to take my life back and do what is in my ability, to get better and live my life to the full, during the good and bad days.
I believe in hope!
Prof IC Chikanza (MB ChB MRCP FRCPCH FACP FCP MD)
Prof R Graham (CBE MD FRCP FACP)
International Arthritis & Hypermobility Centre
The Harley Street Clinic
16 Devonshire Street
London
W1G 7AF
Tel: +44 7444 101 381
E-mail: info@iahcentre.com; iahcentre@icloud.com
In the last 2 weeks I have visited 3 schools to raise awareness for EDS and spoke to the children about being different, and challenged them to "Dare to be Rare". I shared my story as a zebra and my Everest challenge. The children donated an amazing £421 towards EDS Support UK. Please contact me if you want me to come and share my story at your school and help me raise awareness.
* Donate to EDS Support UK by clicking on the JustGiving link below:
* Donate to me personally by clicking on the GoFundMe link below:
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