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Years of questions but no answers until EDS diagnosis at age 35

By Lauren Daly


As a baby I had gastro problems, eczema, food intolerances, blood sugar and sensory problems. I suffered from anxiety as a teenager leading to eating disorders. I have always suffered from a crushing fatigue which came on quickly and just destroyed me. It feels like my limbs are suddenly made of lead and my eyes are heavy and it hurts to move or speak. It is debilitating. I had blood tests but they always came back normal. In my twenties I started having reactions like facial swelling, flushing, eczema & itching, bladder problems that would leave me confined to bed. When I saw a dermatologist I had a skin prick test and it only came up with grass allergy.

 

Over the years I kept getting more reactions, allergy tests, fatigue tests but no answers. It wasn’t until my oldest daughter at age 3 started having tummy and skin issues that I researched more.  I came across an article about histamine intolerance and something clicked. Fast forward a few years and my daughter was diagnosed autistic. I realised that flushing when drinking red wine and burning up wasn’t normal, there was a name for it.

 

I joined the Sussex EDS support group, (SEDS) and found there seemed to be an association between autism and hypermobility EDS. I had no idea what EDS was. I looked it up and it was like someone had written my whole life down and I suddenly had answers! I decided to ask for a diagnosis for my 3 year old daughter. The GP refused and instead referred to a physiotherapist. She was not a specialised in hypermobility and stated upon assessing my daughter that she was not hypermobile. Still something didn’t make sense in my mind so I paid for private for an appointment with a clinic in London.

 

Later I had my last baby but at 7 weeks but she had an emergency unexplained pulmonary haemorrhage and I realised that I needed concrete answers from doctors about my conditions it case it was hereditary. This is where a support group has been so useful. It is very hard to assess a baby for some of these things so I am working on finding out all about myself. I saw the same doctor at the same time. He diagnosed me with hEDS and possible PoTs.   He diagnosed my daughter with hypermobility as so young. He taught me to trust motherly instincts and to not accept the first answer you get, especially if it is not from an expert in the field.

 

Moving forwards, I am trying to learn as much as I can and I am trying to find a way to live as symptom free as I can be investing in my diet. This is hard though as when you have mast cell reactions you can be allergic to a lot of things. I am trying to find out what elements my kids may have inherited as there are heath issues cropping up. No doctor so far has been able to help my three year old son with his gastro, skin and allergy issues and I suspect that EDS could be playing a part. As there is not just one doctor to oversee him, trying to find help can be very difficult. I already have two children with autism and sensory processing issues and this is associated with EDS. My baby appears very bendy and has skin problems, allergies and wheezing and has been put on inhalers. I just hope I can find the right help for my children and can get answers early on so that they can go through life not having to question everything. Hopefully with SEDS we can get more support and awareness. Lauren

 

SEDS members and friends are now working hard to raise awareness of our syndromes in education, health, wellbeing and sport, travel accessibility and employment. Raising funds doing cake sales or dressing up as a zebra at school also helps.   

This month we have a competition to have your picture of a zebra on the website and win a prize. Please see our facebook page or join SEDS to submit entries.

 

Our SEDS facebook page is here:        https://www.facebook.com/SEDSHSD

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