My name is Jodie and I have Ehlers-Danlos Syndrome. May is awareness month for EDS (Ehlers-Danlos Syndrome)/HSD (Hypermobility Spectrum Disorder) and this is whyI'm writing this post. I hope by writing this ; sharing my story, will reach out to others suffering and to make this invisible illness seen.
I have always been a sickly child. At the age of 7 I developed glandular fever, after this my immune system was affected and has made me more susceptible to getting poorly. I got extremely fatigued at the age of 11-13 and started having faints and seizures from the age of 14. I was in and out of hospital and I was told "you're attention seeking" or "faking it". I suffered horribly for 6 years. In 2011 I was rushed into hospital with a twisted and perforated bowel; by luck a doctor saw that my joints where very flexible and he told me to go to my GP and ask for a referral to see a specialist; reluctantly my GP sent me to see a geneticist and I was then diagnosed with EDS. It turns out my Dad had it and it runs throughout my family. EDS has caused me to develop numerous illnesses such as PoTS (Postural Tacycardia Syndrome), Endometriosis, MCAD (Mast Cell Activation Disorder) and gastroparesis.
My life varies from day to day. One day I am in my wheelchair unable to walk due to pain and dislocations; the next day I could have very few symptoms. I get extremely fatigued and get a lot of pain. I am on over 30 tablets a day to manage my symptoms. Although life with EDS is hardI count my blessings, like having such good family and friends.
I encourage other to seek help if they believe they may have EDS /HSD because no-one should suffer in silence. Awareness is needed I hope by sharing this it helps someone.