Swansea mum’s desperate fight for life as fundraiser launched for urgent treatment abroad

Misdiagnosed for years

For thirteen years, Naja has lived with the devastating effects of a cerebrospinal fluid (CSF) leak — a condition that began after complications from a medical procedure punctured her spinal dura multiple times.

What followed was years of severe headaches, neurological symptoms and worsening pain. Despite her persistence, Naja was misdiagnosed for over a decade, leaving her lost in the medical system and without the treatment she desperately needed.

Condition worsens

In recent months her health has deteriorated dramatically. Naja is now completely bed bound in hospital, unable to care for herself or her two young children. Family and friends say she wants nothing more than to regain her health and return to being the vibrant mother her children need.

Specialist care abroad

CSF leaks remain poorly understood, with only a handful of centres worldwide able to diagnose and treat complex cases. One of those is the University Hospital of Freiburg in Germany, where specialists have drawn up a treatment plan including advanced imaging, myelography, and a possible blood patch — with surgery considered if required.

The upfront cost for diagnostics, treatment and inpatient care is €34,000, money Naja simply doesn’t have.

Fundraiser launched

A GoFundMe appeal has now been set up to help Naja access the care she urgently needs. Organisers say every donation will make a meaningful difference, giving her the chance to recover and reunite with her family.

Adela, who launched the fundraiser, said:

“Naja urgently needs assessment and treatment from a specialist team in Germany. This fundraiser aims to help her access the care she needs so she can regain her health and return to her family.”

Supporters are being urged to donate and share the appeal widely to help reach the target.

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#cerebrospinalFluidLeak #CSFLeak #fundraiser #GoFundMe #gofundme #Health #puncturedSpine #Swansea #UniversityHospitalOfFreiburg

RE: https://mas.to/@skeletor/115650781874784413

Reminder to self: you may feel like you've plateau'd, and yes, it's exhausting to be exhausted and tired all the time, but remember: two years ago you could barely walk. You're a expert survivor.

#csfleak #autoimmune #autonomicdysfunction #eds

疾患啓発、患者支援、研究推進がすすみますように。
Hoping for advancement in disease awareness, patient support, and research promotion.

#自己免疫性自律節障害 #AAG #自律神経障害#Dysautonomia #筋痛性脳脊髄炎 #慢性疲労症候群　#MECFS #起立不耐症 #OrthostaticIntolerance #体位性頻脈症候群 #POTS #シェーグレン症候群 #SjS #脳脊髄液減少症 #CSFleak #線維筋痛症 #FM #コロナ後遺症 #LongCOVID

▼MECFS info（個人）
https://mecfsinfo.net/

▼POTS and Dysautonomia Japan（団体）
https://potsanddysautonomiajapan.org/

Das Gesundheits-Magazin Ourbodies hat meine Geschichte erzählt, wie es so plötzlich zu meiner schweren Behinderung kam und es mir damit geht, mit Schwerpunkt auch auf Aufklärung zu #CFSleak nach Lumbalpunktion, #MECFS, aber auch ganz allgemein. Und mein coping (wenn es denn das überhaupt gibt bei ME) mit der Kunst und unser Projekt, mit dem wir mehr awareness schaffen wollen.

https://ourbodies.at/suechtig-nach-leben-in-einem-paralleluniversum/

#nichtgenesen #mecfs #spinalleak #csfleak #disabilityawareness #Lumbalpunktion