Elhers Danlos Awareness UK – My story

It is Elhers Danlos awareness UK month and I wanted to share a real story about my own experience of living with an invisible illness. This is in dedication to #timetodiagnosis which is hosted my Elhers Danlos.org. A UK based organisation dedicated into increasing awareness and offering support to people and their families with the condition.

What is Elhers Danlos Syndrome

Ehlers-Danlos syndromes are a collection of thirteen multi-systemic, heritable disorders affecting connective tissue. With the exception of the hypermobile Ehlers-Danlos syndrome, each type is a distinct entity in a single or small set of genes defined by mutations. Joint hypermobility, skin fragility, chronic pain, common features among the types. I personally suffer from the least life- threatening version which is Type 3 Hypermobility.

My story

Growing up, I do not recall having any issues except for being double jointed in my shoulders but it all around the age of 17, I started to get bloated and feel sick after eating anything. I will go to the doctors regularly and I was diagnosed with IBS.

My problems continued, at the age of 18, I spent my first year of university sleeping, I was always tired and worn out then I was diagnosed with being anaemic and potentially having food allergies. My knees will hurt and my joints will sublax but I took it for being unfit and overweight but I still had no idea what the issue was.

I also developed chronic fatigue and migraines as the years went on and I was being treated for all the different illnesses but the root was not discovered.

I was put on different medications for the different symptoms but had to reason or cause. Symptoms includes IBS (was given anti spasm medicine and peppermint tablets , joint pain ( got steroid injections), Chronic Migraines (co codamol ) dizziness /low blood sugars.

Imagine being a young girl but feeling like an old woman internally and no one understanding your struggle because nothing is visible.

The journey to being diagnosed

It took nearly 9 years to receive a formal diagnoses. I went from being diagnosed with potential lupus to finally having a solid confirmation that the pain and suffering I have been experiencing was not all in my head.

.Hearing that there was reason for all of these illnesses gave me the feeling of relieve but also made me come to the realisation that it is incurable but only manageable via lifestyle.I now had something to work; however the pain can sometimes be debilitating and leave me being stuck in bed for days. The noticed that my pain increased after having children because get more subluxations in my elbows, fingers, ankles and waist but eating clean food and exercising has been my medicine

Make exercise your medicine and food your cure. – Vanessa

Mental health and invisible illness

I struggled for a long time because I thought that I was attention seeking and I was imagining my pain. I was constantly in pain yet I had nothing to explain to others as the cause of my pain. This really affected my mind because I started to get anxious and to be honest at time very down but I have learned that I need to take each day as it comes and accept my limitations. My limitations does not shape who I am.

Tips on getting a faster diagnosis of Elhers Danlos Syndrome

  • Visit your GP
  • Request for a referral to a rheumatology
  • If you can afford to go privately then do so.

How you can help increase Elhers Danlos awareness

The first point of call is to educate yourself. A good resource platform will be Elher-Danlos.org and Elhers-Danlos.com

If you know someone with the condition, take the time to understand them and be patient with them

If you have been diagnosed, use your platform to educate others.

Being on the other side of a diagnosis

Now that I am aware of what I am dealing with, I am able to take better care of myself. I have my limitations but I do not let them hold me back. I aim to do my very best . I have made my duty to eat clean to reduce inflammation in my body and exercise to build muscle around my weak joints.

Check out our self improvement section of this blog

These simple changes have improved my quality of life dramatically and I hope you can do the same. How do you manage your condition on a days to day. Comment below.

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