Teenager battled for years for her disability to be recognised

After years of chronic symptoms, which some believed were 'all in her head', Alena Mae-Donkin, 17, finally received a diagnosis for her disability in August of last year.

Alena was told she has Ehlers-Danlos syndrome; a genetic connective tissue disorder that affects the production of collagen in the body.

She suffers from intense fainting episodes, regular dislocations, chronic pain, as well as being affected by Chronic Fatigue Syndrome (CFS/ME).

The condition has left the once active and sporty teenager needing a wheelchair.

Alena explained: “It affects everything because collagen is in everything. It’s a multi-systemic illness, and there’s not very much research into it at the moment.”

Due to her late diagnosis and a lack of compassion she has faced, she feels that more needs to be done in Wiltshire and beyond to tackle the illness, which affects around 1 in 5000 people in the UK.

The teenager has struggled to access adequate health care treatment and has found that more often than not, doctors do not understand her illness and have labelled her symptoms as being due to her CFS, a separate condition, or have listed her down as having anxiety, a symptom of which she has never suffered from or reported.

Alena said: “In an ideal world, there would be a specific team who could deal with this illness, and provide that extra support.”

She now carries a book about Ehlers-Danlos syndrome with her to appointments so that she can reference her symptoms and give health experts background knowledge so she can access support faster.

Alena Mae Donkin with her ’bible’ a document she carries to explain to medical staff her condition with Ehlers Danlos Syndrome. Photo: Trevor Porter

Alana said: “It’s like my bible, I take it everywhere with me.”

Her mum, Donna Hall has seen the hurdles that her daughter has been faced with, and noted that the effects have been life-changing for her as time has gone on.

Speaking emotionally, she told the Wiltshire Times: “Alena was so active, and sporty and enjoyed all of those things. To then see your child progress to needing a wheelchair and feeling a lack of understanding from people around you is really hard.

“I think it’s quite a common thing that people assume it’s all in your head, and I think seeing Alena have to grieve the life that she had, and friendships that she had and no longer has, has been really hard.”

Alena Mae Donkin with splints on her fingers gets on with her art projects despite her health setbacks. Photo: Trevor Porter.

One of the treatments that have been the most effective for Alena is physiotherapy, which they are having to fight to prolong, as it is the best support they have received since getting the diagnosis.

Donna added: “For years we had not been listened to. It’s been devastating. She’s had CBT and things, but no proper medical intervention."

Zebras exist

According to Ehlers-Danlos Support UK medical students are taught throughout their training that 'When you hear the sound of hooves, think horses, not zebras.'

The charity states: "In medicine, the term 'zebra' is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.

"But many medical professionals seem to forget that 'zebras' do exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions."

Looking to the future, the family is keen for the medical community to show more compassion towards Alena, and her condition so the teenager can start to feel confident that there is a plan ahead, and be free to live the life she wants to.

Donna stated: “Going forward, things feel quite uncertain for me, who wants Alena to become independent, and for her to have a happy, settled life where she’s not having to advocate for herself for every corner.”

Redefining ‘normality’

Alena, being a talented artist, is passionate about expressing herself, and finding the positives in life is a quality that has come naturally to her in the face of adversity.

Challenging people's ideas of what it means to be disabled, Alena is unwavering when it comes to rectifying people’s perceptions if they ask about her condition. She has been challenged in the past by others who have doubted the seriousness of her illness.

On the back of her wheelchair is a display of badges that set the record straight, promoting messages with witty captions: ‘chronic and iconic’, ‘access is a basic right’ and ‘big sick energy.’

“So many people have just assumed I’ve broken a leg or something”, she explained.

“I think as well if you’ve been well to a certain point of your life, and then suddenly you are considered disabled, people really seem to struggle with that concept."