As of: January 20, 2024, 8:56 a.m
By: Moritz Bletzinger
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Hanna enjoyed traveling, doing yoga and taking photos: until Ehlers-Danlos syndrome left the young Berliner confined to bed.
© Private
Hanna can't stand on her own, can't even hold her head.
She needs 24-hour care.
A special operation could help, but the health insurance won't cover it.
Berlin – Seven years ago she felt weak, today Hanna is living a nightmare.
The Berliner suffered from severe exhaustion, such as can occur after a corona infection.
Mistreatment made things much worse.
Today the former social worker is in her early thirties and confined to her bed.
Fatal mistreatment against exhaustion: iron infusion unleashes Ehlers-Danlos syndrome
High-dose iron infusions were supposed to help against the exhaustion disease, a fatal decision.
Because what Hanna didn't know: She suffers from Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder.
The infusions caused inflammation and the disease broke out in full force.
On the beach with her dog: That was Hanna, before the serious mistreatment.
© Private
Ehlers-Danlos syndrome affects, among other things, the joints; they usually become very flexible and unstable.
Hanna developed severe head joint instability.
Risk of death!
The first life-saving operation on the cervical spine followed in 2021.
A specialized neurosurgeon stiffened the head joints, and Hanna was flown to Barcelona in an air ambulance.
What is Ehlers-Danlos Syndrome (EDS)?
EDS is a rare, congenital disease caused by gene mutations that results in disorders of the connective tissue.
It manifests itself through symptoms such as overstretching of the skin and hypermobile joints and affects vessels, muscles, ligaments, tendons and internal organs.
Source: Federal Association of Ehlers-Danlos Self-Help eV
After an examination in Germany, everything got worse: Ehlers-Danlos syndrome affected other cervical vertebrae
After the procedure, Hanna felt better, but the bad news soon came: the underlying vertebrae also became unstable after the stiffening.
This can happen and has happened despite all precautions.
An invasive examination made it much worse, Hanna's mother reports online.
But important regulations for cervical vertebrae are said to have not been adhered to.
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“Her condition is getting worse and worse,” says friend Clara to
IPPEN.MEDIA
.
Hanna suffers from severe neurological attacks, is bedridden and in need of care; her mother looks after her 24 hours a day.
Hanna can only speak a few sentences a day.
Hanna is bedridden, struggling with Ehlers-Danlos syndrome and comorbidities - her dog is also by her side in the hospital bed.
© Private
Hanna needs follow-up surgery: health insurance does not cover treatment abroad
The only thing that can help now: a second operation.
Hanna urgently needs an extension of her fusion surgery.
However, there are no experts for this in Germany.
Family and friends are therefore doing everything they can to ensure that Hanna can be treated again in Barcelona.
The problem: The undertaking is very expensive and German health insurance companies generally do not cover treatment abroad if the illness does not occur acutely during a trip.
Hanna's family knows this.
Similar stiffening operations are also carried out in Germany, but not by doctors who specialize in Ehlers-Danlos syndrome, explains Clara.
She said: “Hanna suffers from severe allergies which can be potentially life-threatening.
She needs a team that can respond to this and has the necessary experience.
The operation is very complicated and lengthy, it depends on the details.”
The family cannot afford treatment costs: Hanna needs 147,000 euros for an operation in Spain
Clara is certain: “The specialist from Spain can ensure that Hanna survives.
And that the operation is also a success.” She has already been in contact with the doctor and received a cost estimate.
Transport has raised a sum that the family cannot afford.
In total she needs 147,000 euros:
80,000 for the operation including preliminary examination, treatment and hospital stay after the procedure.
60,000 euros for ambulance flights to Barcelona and back (traveling with an unstable cervical spine requires special caution).
3500 euros for one month for rehabilitation in a nursing home.
4,000 euros for the costs of the fundraising portal (the website keeps 2.9 percent plus 25 cents per donation).
Hanna's family has been collecting money online for a good nine months and is asking for donations via Gofundme.
Of the required 147,000 euros, only 12,819 have been raised so far (as of January 18th).
And the waiting hurts.
If you would like to donate, you can do so via this link: paypal.me/hopeforhanna.
Ehlers-Danlos syndrome is treacherous: “We need a doctor who knows his stuff”
Is surgery really not an option in Germany?
The Federal Association of Ehlers-Danlos Self-Help provides clarification at the request of
IPPEN.MEDIA
.
Yes, there are some doctors in Germany who are familiar with it, but EDS is a treacherous disease.
“What is good for one person is poison for another.
If the cervical vertebrae are affected, patients need orthoses and support options.
You need a doctor who knows his stuff and can raise awareness.” Specialists in other areas can treat symptoms, but there are no specific experts who focus fully on Ehlers-Danlos syndrome.
The association has chosen a zebra as its emblem.
Because no zebra has the same stripes and no EDS patient is affected in the same way.
(moe)