Rachael's story

I was diagnosed on my 29th birthday, this was a very late diagnosis and why things have become so severe for me. Unfortunately I suffered from Anorexia Nervosa from the age of 16 to 24, so this covered up vital signs of my Ehlers Danlos Syndrome.

When I finally fully recovered from my mental illness, I had one year of freedom, and then it began. Starting with poor circulation, to osteoporosis, scoliosis, arthritis and chronic pain, I was led to believe it was "my fault" for what "I did" to my body with Anorexia. However, each year I would get a new symptom and I knew something else was wrong.

I was in hospital a lot with breathing difficulties, severe muscular/joint/nerve pain, intracranial pressure and hyperthermia, but still was not believed to have an underlying cause to these. The doctors would start to think it was in my head as these symptoms were so "random" and that I had hypochondriac tendencies. Little did they know that it took a lot for me to go to a hospital, considering I spent 5 years in them with my mental illness.

I had also tried to get help with pain I had in my jaw. I had Osteopathy therapy and remember her unable to know why it was going into spasm so much and it felt very different to her. 3 years later, it locked, and led me to get a private X-ray which showed erosion and finally I was helped with an MRI and then surgery.

However, it was unsuccessful and as my Ehlers-Danlos makes it complicated, I find myself left without treatment again. My last Cone Beam CT Scan showed more erosion, a displaced disc and osteophyte formation indicating late stage degenerative joint disease. No wonder I've been in agony and unable to chew properly and need to limit the amount I talk in a day. The constant crunches, cracks, displacement and locking have become normal to me, but no less painful. I still continue to seek help with this.

The other serious complication at present is why I am in New Zealand. I am originally from the UK and had to move to Malta 5 years ago due to the cold temperatures impacting me to the point of life threatening. I end up in hospital every winter and each time in so much fear. My hands and feet go black, blistered and swollen, I get serious vascular spasms in my legs, sharp pain in my head, my blood pressure drops to around 70/40 and a heart rate of 32 - 40bpm, and on one occasion went into Haemolysis.

Maltese winters are now too cold for me, so as of this year I have to live between New Zealand and Malta. I do visit my family in the UK, but it is always a risk and I feel on edge. Even in NZ and Malta, if I see the weather changing or a few cold days ahead, the fear is indescribable. It sounds "so luxurious" to need to travel, but it's very tiring and very expensive, as well as never really knowing where home is. Once you settle, it's time to leave again. It's also incredibly hard to get help as I fall through the net of medical systems with the geographical nightmare.

I don't remember a day in my adult life that I didn't feel pain and need to rest frequently in the day to manage, and though I can't work a lot with my circumstances, I still live a very happy life and refuse to give in.

I have written a book about my mental illness, "At War With My Mind", and in the process of writing, "At War With My Body". I have also launched a charity "Walk and Talk", and I teach Pilates in the location I am living in, and also online to the one I am not! Planning this with the time difference keeps my brain working!

I am not fuelled by career ambition, money or anything tangible, which is lucky as my illness doesn't really allow for this, but I love to know I can help others with what I have been through before and what I have now, and it turn, it makes the suffering somewhat worth it.

My main ambition right now? To get a research study going for Ehlers-Danlos Syndrome, as I know there has to be something that can help people like me.