One of my conditions I write about a lot on my blog, is Ehlers Danlos Syndrome (EDS). I always find it interesting to hear other peoples perspectives who live with the same condition. So, today I am sharing Ansley’s experience of living with hypermoblity EDS.
1.What is Hypermobility Ehlers Danlos Syndrome?
Hypermobility Ehlers Danlos Syndrome, is also known as Ehlers Danlos Type 3, and is a connective tissue disorder. Due to the faulty collagen, the collagen does not keep the bones in place, which causes frequent sublaxations, dislocations and means someone with it, is in pain and more at risk to fractures.
No two patients with hypermobility EDS are the same.
Some, can live relatively normal lives with mild symptoms, whilst other suffers may be in a wheelchair full time with feeding tubes. EDS can attack different parts of the anatomy, such as the bladder and stomach. Many patients also live with co-commodities such as Mast Cell Activation Disorder and Postural Tachycardia Syndrome.
2.What are the main symptoms you suffer from?
- Chronic joint pain
- Chronic fatigue
- Comorbidity symptoms
3. How do you manage Ehlers Danlos Syndrome on a day-today-basis?
- Tiger balm
- KT tape
4. How was your journey to diagnosis for Ehlers Danlos Syndrome?
Thankfully, my journey to diagnosis wasn’t aslong as most people. From start to official diagnosis was not even 2 years. My rheumatologist knew during my first appointment, during the first 15 minutes. She referred me to a geneticist, who saw me 6 months later and confirmed her suspicions.
5.What have you learnt about EDS since being diagnosed?
I have learnt that soft skin isn’t normal and that my body movements probably aren’t normal. My life is the exception to almost every medical rule. A lot of people have it a lot worse, especially when they don’t have the awesome doctors I have. I am grateful, my family is amazing!
6. How has Ehlers Danlos Syndrome changed your life?
Ehlers Danlos Syndrome has made me more perceptive into others people’s lives. I’ve been on the “healthy” side looking in to a life of chronic illness, but now my perspective is flipped and I can relate to more people. But also, it sucks being sick and knowing there is no cure.
7. What perceptions changed since you were diagnosed with EDS?
I’m more understanding that not all illnesses are visible and to act accordingly.
8. What information do you wish you were given when you was diagnosed with EDS?
I’m not even sure, to be honest. I was relieved to have an answer for my pain and all my doctors have been sympathetic toward the diagnosis.
9.Have you gained any new hobbies since being diagnosed with EDS?
Not new hobbies but I still paint, draw, color, and I’m teaching myself to sew.
10. What emotional support do you have for Ehlers Danlos Syndrome?
My mom is my rock but my whole family is my support system.
11. What do you find are the most challenging parts about EDS?
Normalizing my life, as I am currently unemployed. There are certain things I can’t do, like I can’t do laundry AND go to the store AND clean the kitchen after I cook. I have to pick and choose because my energy is limited. I don’t always know how much energy I have either so overdoing it is easy and then I can’t do anything the next few days.
12. What advice would you give to someone newly diagnosed with EDS?
It’s okay to say and act like you are not okay.
It’s okay to be depressed when you get diagnosed and it’s okay if it comes and goes.
13. What are your plans for the next year?
Maybe find a job. I’m waiting on God to instil some direction.
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