Ehlers-Danlos syndrome and cervical instability: “I’m confined to bed 24 hours a day”

An active life despite Ehlers-Danlos syndrome

Pauline has experienced symptoms associated with Ehlers-Danlos syndrome since childhood. Despite the challenges of the condition, she managed for many years to lead what she describes as a relatively normal life.

Passionate about dance and photography, she remained physically active until the age of 20, when she had to give it up. She also worked as a chemist in the fragrance industry, checking that formulations complied with regulations.

She lived with her partner and remembers this as a happy period, despite the pain and joint dislocations associated with her condition.

August 2024: a rehabilitation stay followed by new symptoms

In August 2024, Pauline entered a rehabilitation centre to strengthen her muscles and reduce the frequency of her dislocations, particularly in her shoulders and hips.

According to her account, her care included daily massages of her trapezius muscles and neck to relieve chronic pain.

During her stay, new symptoms appeared: headaches at the base of her skull, increasingly frequent episodes of food going down the wrong way, and spells of feeling faint or unwell.

Exhausted and unable to understand what was happening, she asked to end her rehabilitation at the end of November 2024.

Over the following weeks, her condition continued to deteriorate. She describes severe neck pain and headaches, involuntary head movements, and increasing sensitivity to light and noise.

She made repeated visits to the emergency department, where her symptoms were attributed to migraines.

December 2024: a sudden deterioration after neck manipulation

On 19 December 2024, following her doctor’s advice, Pauline consulted an osteopath for what had been described to her as occipital neuralgia.

She reports undergoing manipulation at the base of her skull and around her neck. A few hours later, she noticed a sudden worsening of her symptoms: she could barely articulate words or swallow and would choke when she tried to eat.

Over the next ten days, she says she lost five kilograms because she could not eat properly. Episodes of temporary paralysis also began.

On 31 December 2024, she spent New Year’s Eve alone in an emergency department cubicle after an episode of paralysis affecting the right side of her body.

After two days in hospital, she returned home without a solution, with migraines once again suggested as an explanation.

A ten-day admission to an internal medicine department followed in early January. According to Pauline, no diagnosis explaining all her symptoms was established at that stage. She was offered protein-enriched liquid medical nutrition to compensate for her difficulties eating.

Persistent symptoms and the feeling of not being heard

Throughout 2025, Pauline continued to experience episodes of paralysis and dystonia.

From June onwards, she says she could no longer articulate words and had difficulty swallowing, even her own saliva.

She consulted several neurologists and ear, nose and throat specialists, but reports feeling that her symptoms were being attributed to psychological causes. Psychiatric care and a return to a rehabilitation centre were among the options suggested.

According to her account, functional neurological disorder (FND) had been considered or diagnosed during her medical journey before she received her diagnosis in Barcelona.

Despite her condition, Pauline tried to continue with her personal plans. After living with her mother from the beginning of 2025, she attempted to move back in with her partner and explore buying a house together.

However, she gradually became less independent.

On 25 December 2025, another episode of paralysis, accompanied by breathing difficulties, brought her back to the emergency department. She says she was discharged a few hours later after being told that a panic attack explained her symptoms.

According to Pauline, however, the breathing difficulties persisted, and her condition continued to deteriorate in January 2026.

February 2026: losing her independence

In early February 2026, Pauline describes developing neuropathic pain throughout her body.

On 9 and 10 February, she contacted her pain specialist and then her primary care doctor, but no solution was found.

On 11 February, she urgently needed to rent a hospital bed and buy a commode. She explains that she could no longer walk and felt intensely nauseous whenever she was upright.

Her mother then moved in to help her.

Pauline says she has been confined to bed full-time since then.

However, she noticed that when she was lying down with her head supported, she could articulate words more clearly again and swallow slightly more easily.

This observation led her to question whether there might be a connection between her symptoms and her cervical spine.

A diagnosis in Barcelona in May 2026

After several weeks of her own research, Pauline discovered the work of Dr Gilete, a neurosurgeon based in Barcelona whose interests include cervical instability in people with Ehlers-Danlos syndrome.

She secured a video consultation in April 2026.

The specialist recommended dynamic imaging examinations and wearing a cervical collar.

In May, despite her condition, she travelled to Barcelona lying down in an adapted vehicle.

On 20 May 2026, following examinations that included dynamic CT scans, the neurosurgeon gave her three diagnoses:

• Craniocervical instability at C0–C1.
• Atlantoaxial instability at C1–C2.
• Tethered cord syndrome.

Unlike examinations performed only while lying down, Pauline explains that these investigations allowed her cervical spine to be assessed while she was sitting and moving her head into different positions.

According to the medical explanations she recounts, abnormal movement of her cervical vertebrae could cause intermittent compression of neurological structures, including the brainstem, cranial nerves and spinal cord.

She also reports undergoing an evoked potentials test which, according to the report presented to her, suggested damage to the spinal cord in her neck.

These conclusions reflect the diagnosis and interpretation of the team she consulted in Barcelona. They do not, on their own, establish that the earlier manipulations caused all her symptoms.

“Today, my daily life revolves around a bed and a commode”

The consequences of this deterioration have been considerable for Pauline.

She describes spending her entire day in her bedroom, in dim light and silence, because sensory stimulation makes her symptoms worse.

She wears a cervical collar but says she cannot remain seated and can no longer hold her head up without support.

Her mother helps her eat, wash and carry out essential everyday tasks.

Pauline can no longer work, walk, read or watch television as she once did.

She also describes the end of her relationship during this ordeal, as well as losing contact with some of the people around her. Some people, she says, did not understand the severity of her condition and thought she was simply experiencing depression.

Alongside the loss of independence, she now faces profound social isolation.

Surgery proposed abroad, but at a cost of €116,000

According to Pauline, no surgical or non-surgical care suited to her situation has been offered to her in France so far.

She explains that she contacted several neurosurgery departments in major French cities without finding a team willing to take on her case.

She also reports that a doctor involved in researching Ehlers-Danlos syndromes advised her to seek expertise abroad.

In Barcelona, she was offered surgery. According to her account, the proposed surgical plan includes a cervical fusion, traction applied to her head, and a procedure to address the tethered cord.

The stated aim would be to stabilise her cervical spine and reduce the suspected neurological compression.

However, this is complex surgery, and its indications, expected benefits and risks require an individual assessment by specialists.

For Pauline, the main obstacle is financial: she says she has received a quote for €116,000, which she would have to pay herself.

Her trip and diagnostic assessment in Barcelona have already cost just over €10,000, funded through an initial crowdfunding campaign.

With France’s disability allowance for adults, known as the Allocation aux adultes handicapés (AAH), as her only income, she explains that she cannot afford this next step on her own.

She has therefore launched another fundraising campaign and is considering organising fundraising events to raise awareness of her situation.

Sharing her story to help others

Beyond her own care, Pauline wants to draw attention to the difficulties faced by some people with Ehlers-Danlos syndrome when they experience complex neurological symptoms.

She hopes her account will raise awareness of cervical instability, encourage dialogue between patients and healthcare professionals, and improve access to specialist assessment in France.

She also wants to support others who feel alone or misunderstood during their medical journey.

She has recently begun receiving support from ASPH, an organisation based in Caussade, France, that helps people affected by rare diseases.

To share her story and the steps she is taking, Pauline documents her daily life on Instagram under the username @latatehaute.pauline

A call for understanding and solidarity

Pauline’s account illustrates the human consequences of a long and difficult medical journey: losing independence, having to stop working, the breakdown of social connections, and financial barriers.

Her hope now is to find appropriate care while also giving a voice to people who, like her, live with disabling symptoms and struggle to find answers.

Through her story, she calls for more attentive listening, better coordination of medical care, and solidarity.

Link to her fundraiser: Support Pauline’s fundraising campaign