Nil-by-mouth foodie: The chef who will never eat again - hypermobile Ehlers-Danlos Syndrome

[MeSci]

This is a long article about someone with EDS.

Nil-by-mouth foodie: The chef who will never eat again - BBC News

By Kirstie Brewer

BBC News

Loretta Harmes hasn't eaten for six years, but she hasn't lost her passion for cooking. Even though she cannot taste her recipes, she has a growing following on Instagram, where she's known as the nil-by-mouth foodie.

Loretta crunched into a roast potato and savoured its fluffy insides. She and her mum, Julie, had taken great care to get everything just right because they knew this would be her last ever meal.

In a matter of minutes, a familiar pain would squeeze her stomach like the wringing of a dishcloth, just as it always did whenever she ate or drank anything. Then she would feel painfully full and sick. As if her stomach had been pulled so tautly it would burst...

...What is Ehlers-Danlos syndrome?

• Ehlers-Danlos syndromes are a group of 13 disorders affecting connective tissue. This is tissue that supports, protects and gives structure to other tissues and organs in the body - it is found in skin, bone and ligaments, for example.
• In Loretta's case, there is damage to the connective tissue in the wall of her intestines, and as a result food travels less smoothly through her digestive system. (Her stomach paralysis is a separate but linked condition.)
• The syndromes are generally characterised by joints that stretch further than normal (joint hypermobility), skin that can be stretched further than normal (skin hyperextensibility), and tissue fragility.
• One side-effect of having stretchy skin is its soft and youthful appearance. "My skin is like pizza dough and so soft - so there are some upsides!" says Loretta.

Source: Ehlers-Danlos Society

On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked.

More at link

 

[Jonathan Edwards]

This does not sound like anything to do with EDS.
It is unfortunate that the EDS society seems to got sucked in to all sorts of pseudoscience lead by Alan Hakim and Co..

 

[Sly Saint]

Loretta was on local BBC news last night.
They covered the same info from the article above including:

At 19 she went from just about managing, to becoming bed-bound by pain.

"Things went downhill dramatically - I couldn't eat or go to the toilet at all, and then the next five years became a nightmare I couldn't wake up from," she says.

This nightmare began with a doctor who was convinced that Loretta's rapid weight loss could only have been caused by the return of her anorexia.

Mental health services soon got involved and Loretta spent more than two years in eating disorder units. At one point she weighed just four stone.

Forcing herself to eat in order to gain weight seemed to her the only way out of the cycle, even though the pain it inflicted was severe.

Her desperation would sometimes turn to rage and she was sectioned under the Mental Health Act three times, for a total of 18 months to stop her leaving.

"I told them repeatedly that the only reason I am depressed is because of my bowel and stomach difficulties, but they didn't believe me," she says. 'Delusional psychosis' was added to her medical notes.

She attempted suicide several times because of the hopelessness she felt at not having any treatment for her pain.