The DISabled to ENabled podcast

54. Celestine Fraser | Glowworm Films Founder | EDS + P.o.T.S diagnosis

March 16, 2020

Topics discussed:

 

What is Ehlers danlos syndrome (EDS) and post tachycardia syndrome (P.O.T.S)?

Ehlers danlos syndrome is a group of connective tissue disorders. Celestine has hypermobile ehler’s danlos syndrome. EDS is A deficiency of collagen - a protein - it’s the glue that holds your body together. 

 

Affects her joints by partial dislocations and causes chronic fatigue. puts a lot of pressure on the joints because the muscles aren't’ strong enough to hold them. 

 

P.o.t.s - is a dysfunction of the autonomic nervous syndrome. Body temperature, heart rate, digestion, blood being circulated around. 

 

Both multisystemic conditions. People go through good and bad patches. It’s not a progressive illness, it's a collagen deficiency from birth. 

 

“You’ve got a slightly wonky body that wasn’t built right.”

 

First signs, at age 17, noticed getting more tired than peers. Just after starting to drive, being taken to Abbey road by her driving instructor, Started having a terrible pain in her neck, thought she was anxious because of driving lessons. The pain got more and more intense. Lessons got shorter. She tried to just get on with A levels, but was getting more and more tired. 

 

She now thinks, ‘Maybe I should have intervened faster than I did’. 

 

Had a stressful time at home because her dad had been diagnosed with a type 4 brain tumour. He had to have major brain surgery. They all plodded on as best they could while he was going through treatment. 

 

This period of massive stress was when my symptoms started setting in. 

 

Stress is a major trigger with many people with P.o.T.S. Your body is in a flight or fight state constantly especially when your family is going through a really hard time. 

 

Celestine was in denial at first, worried people would think she had an anxiety problem and worried doctors would dismiss physical symptoms and put it down to anxiety. 

 

She was misdiagnosed with CFS, something a lot of young people particularly young women get diagnosed with. Most people diagnosed with that aren’t happy with the diagnosis because it’s more a diagnosis of the symptoms not the condition itself. She had symptoms that were different. Then she was dx with Myasthenia gravis - she couldn’t tell you a single thing about it now but at one time she was an expert. Celestine was put on a lot of steroids which made her self conscious as it affected her appearance. Then she went back to CFS and got really bad headaches. Saw a neurologist who was a headache specialist. He noticed she had a lot of markers for Hypomobility. He sent her to a rheumatologist. It was a big relief at the time. 

 

The diagnosis process is currently far too long at the moment. It needs to be sped up because people are becoming far sicker than they need to be and a lot of it is preventable. 

Hypermobile EDS doesn’t require expensive tests, it just needs a doctor to look at you and do the baker scale, hypomobility scale. Involves bending your body in a few different ways. It’s something GP’s could do it doesn’t require an expert. 

 

Never shared an illness story before because she felt she wasn’t taken very seriously by doctors because of age. 

 

Felt at times patronized by doctors and was diagnosed with anxiety in the first year of being ill. She says she doesn't think an 18-year-old girl is taken very seriously by doctors. You get told your body's changing anyway so new symptoms are just part of the deal. 

 

Connect with Celestine:

www.glowwormfilms.co.uk

Twitter - @celestinefraser

Instagram - @celobean 

 

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