My story – Georgia
My name is Georgia and I’m 13. I was a healthy child until the age of 4, when I got a very bad virus that lasted for weeks and from which, I never fully recovered and suffered repeated infections, felt tired all the time and everything was hurting. Around the same time, it was discovered by chance that I had cataracts in both eyes, these grew very quickly and I needed surgery to replace the lenses in my eyes. The operations were complicated and I did not respond like all other children; I suffered severe reactions to the anaesthetic and pain medications and my eyes did not heal correctly, so I needed further major surgery to save my vision. The doctors were really perplexed and had never seen anything like it. I was also suffering with nausea, itching all over, eczema, breathing problems, rashes, a very fast heart rate, very flexible and painful joints and more.
My paediatrician was really confused and tried his best to help by requesting tests and trying different medications but I was too ‘complex’ for him and he kind of gave up. I was trying my best to carry on with my life and by playing with friends, going to school and extracurriculars. It was really difficult and sad, I had a lot of time off school but when people saw me, I looked ‘normal’ but they did not realise what I was going through.
I was diagnosed with ME/CFS aged six and was taught how to ‘pace’. I was also diagnosed with a severe house dust mite allergy and intolerance to wheat and milk, so was told to cut these out of my diet, which was so difficult and very sad because I love cheese and pastries. A defining moment was when I said to my mum that ‘my bones feel out of place’, so she became super sleuth and began connecting the dots which the doctors had been unable to do. She got me referred to the right specialists and fought hard for me. Fast forward and here are my diagnosis:
Cataracts – age 4 ME/CFS – age 6
Hypermobile Ehlers Danlos Syndrome – age 9 (five years to diagnosis) Postural Orthostatic Tachycardia syndrome – age 9
House dust mite, allergic rhinitis and food intolerances – age 7 Asthma and eczema – age 11
Mast Cell Activation Syndrome – age 12 (8 years to diagnosis)
My mum fought difficult legal battles over several years for my education and entitlement to disability benefits, alongside caring for me. Even when an EHCP was finally awarded, the school did not implement it and I was not given the support I needed, it was so sad and incomprehensible. When we made a formal complaint, school turned on us, suddenly disbelieved my diagnosis and accused my mum of fabricated and induced illness. They contacted all of my doctors to try to get them to gang up on us, which some did and I was treated like a criminal.
We both now have psychological support to cope with the trauma we have faced. I was at risk of being taken away from my family and put in care, just because we made a complaint and I have a series of conditions that the NHS do not understand or cater for. Now I am tutored at home, which is far better for my health. I have great tutors who are really compassionate and fun. Technology keeps me in contacts with the world and my friends. I have found activities and hobbies which suit my body and keep my brain entertained.