My long journey to getting a Diagnosis

When I was a baby the midwife noticed that my hips didn't rotate properly when she did my checks however I don't think it caused me any problems with crawling or walking. Then I started primary school it was during a medical assessment by the nurse that she noticed my knees turned in, I was knock-kneed and my feet were very flat, I had no arches. I was referred to an Orthopaedic Specialist who carried out various tests on my legs and hips and decided that I needed night splints to try and straighten them and also night boots as well, these were horrible for a young child to have to wear as they were uncomfortable and had metal bars going across, if I needed to go to the toilet, my Mum or Dad would have to carry me. I had to sleep on my back as they were bulky and wore them for quite a while but they didn't really make a lot of difference to my legs like they hoped. I was referred to physio for exercises to help my flat feet but I don't think they made much difference.

I managed to get through primary school without too many problems other than I didn't find school easy, writing was difficult as I couldn't write straight, so had to turn my paper round and I had co-ordination issues with knowing my left and right, this caused problems with P.E. which I didn't enjoy especially when balls were thrown to me. I hated running due to my knees turning in my legs kicked out to the side, which looked strange compared to other children and I got tired easily.

Before starting secondary school I was diagnosed with Asthma after struggling with cross country running and not having much stamina. I also suffered a lot with chest infections and coughs.

Asthma inhaler

In my teens I suffered more with chest infections and problems with my Asthma, which at times required steroids and a nebuliser to help me. I had to have chest physio to clear the mucous as I had problems doing this.  I had more problems with my hips and knees especially my left one which became quite inflamed making walking really difficult, I had to use crutches for a long time, which wasn't easy getting around in a school where there were no lifts. I fell a few times trying to get up and down stairs.
I was referred to an Orthopaedic Specialist and told I had Dysplasia of my left hip, which meant the socket was too shallow. At times my hip would feel stuck for a few minutes and I would have to move my leg around before it felt ok. This was probably Subluxation 
I also had to wear special orthotics in my shoes due to my flat feet and one of my shoes had to be built up as one leg was slightly shorter.

When I was about 18 and studying Health & Social Care at college, I was involved in a minor RTA where I sustained a minor Whiplash which I never fully recovered from, even though I had regular physiotherapy which didn't make much difference and wore a cervical collar I continued to suffer, my neck was like elastic, normally people would recover from a whiplash and following this I suffered severe migraines which at times presented like a stroke with numbness down my face and body, I also had back problems which I don't remember having before this accident.

While I was at college I kept having strange symptoms of lightheadedness, shortness of breath, fast heartbeat, nausea which I believe was the start of my PoTS, I would struggle to get up the stairs for lectures and would be puffed out when I did reach the top with a fast heart rate, so I was allowed to use the lift in the end. I missed a lot of college due to health problems and wasn't sure whether I would complete the course. I wanted to go on to University to study Nursing when I left college, however my health was not good enough.

Throughout my life I have been seeing different physios and none of them could really understand what was going on as I was presenting with many different problems that were unexplainable. I would keep losing my balance a lot as my legs would give way and luckily people would catch me, suffer intermittent pins & needles with numbness, muscle wastage and widespread pain, It was only after being with my current physio for two years that she thought I may be hypermobile as she tested my skin on my hand which she thought may be a bit stretchy and suggested I made an appointment to see the leading expert in London, Prof Rodney Grahame as she had been to see him with her daughter who was diagnosed with EDS, she thought it was worth trying as there was no harm in it and after years of different problems that no medical professional could understand, it may just give me an answer.

I saw Prof Rodney Grahame in 2014 and it was the best thing I ever did as he diagnosed me as having hypermobile Ehlers Danlos Syndrome (hEDS) after taking a detailed history and performing various tests on my joints and skin he told me there was no cure and it was just about managing the symptoms the best you can, he referred me to an inpatient program at Stanmore Hospital. I was relieved to have a name for what I was suffering with throughout my life and that it wasn't in my head as I think people started to think this, I was so grateful to my physiotherapist for telling me to go and see the expert as I would still be suffering in silence without a diagnosis.

medical consultation

Can you relate to what I went through? I have been on a long journey to getting my diagnosis and at times felt I was going mad as I kept experiencing different problems that didn't make sense and thought, am I mentally ill, what is happening to me!  but at least I have a name for what I am suffering with, there are a lot of people who still don't know what is wrong with them and do not know who to go to for answers. I am very lucky to be diagnosed, even though it took many many years.

My 10 Tips for someone newly Diagnosed

When you receive a diagnosis there are so many things you want to know regarding your condition but you don't know where to start. Some things I have learnt on my journey which I wish I knew from the beginning but no-one tells you these things, I wanted to share with you.

  • Research on the internet all about your condition but make sure you use reputable sites.
  • Find support groups on Facebook, as this is a great way to find out things and communicate with others going through the same.
  • Look for organisations specific to your condition and become a member, this is a great way to get all the updated research 
  • Look for Specialists that are familiar with your condition, you can probably find this information from relevant organisations or by talking to others.
  • Don't be afraid to ask for help, being diagnosed with a long term condition can take a huge toll on you mentally as well as physically 
  • Try and keep as physically active as possible as the stronger you are the better chance you have of reducing serious disability in the future. 
  • Try and eat a well balanced diet if you are able to ensuring your body gets all the nutrients it needs to help with healing
  • Make sure you get plenty of rest as well as activity, getting the balance is difficult at first but in time will be easier
  • Look for equipment that may make life easier if you are struggling walking, consider crutches or a wheelchair
  • Realise you are not on your own there are other's out there going through similar to you  

Please feel free to share your journey, as everyone will have a different story.

zebra journey

 photo new signature for posts_zps8xcyqcdx.png


  1. I'm so glad you finally saw a doctor who listened and worked with you to get a diagnosis. It's incredibly difficult when you feel like you're going crazy or worse, when doctors tell you it's in your head. Great article!

  2. Great post. So many of us go through years, if not decades, of suffering prior to diagnosis. So sad. You give some great advice to new zebras! We really have to be prepared and dedicate ourselves to our health for the best possible outcomes.

  3. I am surprised it took so long to get your diagnosis with problems from a young age but it does take time to piece it all together. I am glad you got an office diagnosis and heard that proffesor is good! I had to seek a diagnosis privately and then most of the related conditions came after although I had many immunology problems like you from a young age. I hope you don’t have to wear splints anymore I do and I am so sorry to hear physio was not to beneficial for you to ! I am still going through intense physio xx

  4. So glad you got your answer! I know the strange happy/sad feeling of being diagnosed. So glad to hear I'm not the only one with a story like this. :) Thanks for sharing!

  5. I've never heard of this condition before but I read your story with interest since my niece has a problem with her hips (and also posture). It's so good you got a diagnosis at the end and you know exactly what you have, it must have been terrible all those years suffering with various symptoms and not knowing what's wrong with you.