I Need Urgent Life-Saving Specialist Care In Germany
I’m running out of time — a critical convergence of three rare and serious conditions is causing a perfect storm of progressive, permanent brain damage. My life is falling apart around me as I struggle within a healthcare system that has proved both indifferent to and incapable of diagnosing or treating this complex and rapidly worsening health crisis.
But there’s hope: treatment is ready and waiting — if I can overcome the financial hurdles and reach the specialists in Freiburg, Germany, who were the ones finally able to diagnose me.
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Trying To Keep A Disaster Concise
Deciding how to create a fundraiser to save your own life — being told it has to check all the boxes of being catchy, the right length, and filled with cheerful photos of you so people will want to help — is a surreal and daunting task. No pressure, right? Well, here we go.
There’s a short medical summary below for the compassionate skimmer, and the whole tamale further on for those who want to dig deep into the details of this hellscape. Either way, your time and compassion are appreciated beyond words during this critical juncture in my life. You have my undying love for every donation — no matter how small — and every single share might reach another person able to help save my life.
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At My Wits’ End
Because I haven’t had the means to access the care waiting for me in Germany, I’ve been forced to keep searching for adequate specialist care here in Sweden as my condition worsens — a search that has only led to one dead end after another, the latest being a shattered hope of receiving help at Stockholm’s Karolinska University Hospital.
After six months of being repeatedly sent home from the emergency room and desperately seeking help within the Swedish healthcare system, I’ve reached a terrifying crossroads: I’m now far too sick to keep fighting this uphill battle, and time is running out — the care I urgently need is available and waiting in Germany, while I lie here rapidly deteriorating.
It’s an absurd situation — to not receive the care you need in your own country — and profoundly uncomfortable to so publicly and literally have to beg for your life. But desperation and death anxiety are very strong motivators.
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Summary
• Diagnosed with: Infratentorial Superficial Siderosis (iSS) — a progressive neurological disorder caused by chronic bleeding into the cerebrospinal fluid (CSF).
• Root cause: A highly suspected cerebrospinal fluid (CSF) leak, causing the brain to sag and fragile veins to rupture.
• Complication: Triple-Positive Antiphospholipid Syndrome (APS) — a severe autoimmune disorder requiring lifelong blood-thinner treatment that significantly worsens the bleeding that is driving iSS.
• Result: A destructive cycle of bleeding, iron toxicity, neuroinflammation and nerve death that’s permanently damaging my brain and threatening my life.
• Urgent need: Specialists at Freiburg University Hospital — among the world’s leading CSF-leak experts — have identified the problem and outlined a treatment plan using advanced imaging to confirm and locate the cerebrospinal fluid (CSF) leak, followed by targeted repair to seal it permanently.
• Obstacle: Financial barriers are the only thing standing between me and the urgent, life-saving treatment needed to stop this severe health crisis — to halt my rapid decline and give me a chance to recover.
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In Full
Specialists at Freiburg University Hospital in Germany — among the world’s leading experts in diagnosing and treating cerebrospinal fluid (CSF) leaks — have diagnosed me with Infratentorial Superficial Siderosis (iSS) based on objective MRI findings. iSS is a progressive neurological disorder in which repeated bleeding into the cerebrospinal fluid releases iron that settles as toxic deposits on the brain and spinal cord, causing ongoing and irreversible nerve death.
The Freiburg team strongly suspects an underlying cerebrospinal fluid (CSF) leak as the root cause, based on my highly specific symptom profile consistent with Spontaneous Intracranial Hypotension (SIH) — a condition where a tear in the membrane surrounding the brain or spinal cord causes the brain to sag and fragile veins to rupture, leading to chronic bleeding and neurological injury.
Complicating this further, I also have Triple-Positive Antiphospholipid Syndrome (APS) — the most aggressive form of this autoimmune disorder, which makes my blood dangerously prone to clotting and requires lifelong treatment with the blood thinner warfarin. This, in turn, greatly increases bleeding from the CSF leak, accelerating the progression of Infratentorial Superficial Siderosis (iSS).
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The Perfect Storm
Together, these three conditions — the Cerebrospinal Fluid (CSF) leak, Infratentorial Superficial Siderosis (iSS), and Triple-Positive Antiphospholipid Syndrome (APS) — form a destructive and rapidly worsening cycle of bleeding, iron toxicity, neuroinflammation, and nerve death that’s permanently damaging my brain and threatening my life.
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The Three Conditions
1 — Cerebrospinal Fluid (CSF) Leak
A CSF leak occurs when a tear in the dura — the membrane surrounding the brain and spinal cord — allows the protective fluid to escape.
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Loss of CSF pressure causes the brain to sag, stretching nerves and veins, increasing pressure on pain-sensitive structures, and lowering overall pressure inside the skull.
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This leads to:
• Severe headaches that worsen when upright and ease when lying down
• Bleeding in the brain
• Sensitivity to light and sound
• Nausea and dizziness
• Hearing changes and tinnitus
• Neck pain and other neurological symptoms
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This short video does a great job of explaining what happens inside the brain and spine with a CSF leak:
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2 — Infratentorial Superficial Siderosis (iSS)
Infratentorial Superficial Siderosis (iSS) is usually caused by a chronic ventral dural tear along the spinal dura.
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This allows cerebrospinal fluid (CSF) to leak and blood to seep into the subarachnoid space — where CSF normally circulates.
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Recurrent bleeding from fragile veins releases iron, exposing the brain and spinal cord to blood components that should never be there.
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Over time, hemoglobin from these bleeds breaks down into iron, which accumulates as hemosiderin — forming toxic deposits on neural tissue.
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This iron is highly neurotoxic, triggering oxidative stress, inflammation, and progressive nerve death, particularly in the cerebellum, brainstem, and cranial nerves — especially cranial nerve VIII (hearing and balance) and cranial nerve II (vision).
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Damage to these nerves causes hearing loss, tinnitus, sound sensitivity (hyperacusis), light sensitivity (photophobia), and visual disturbances — symptoms that, in my case, are extreme and among the most disabling and isolating aspects of this condition.
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Essentially, the iron-induced neurotoxicity causes progressive irritation and degeneration of these nerves, making normal sensory input — light, sound, and motion — feel painfully amplified.
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These deposits continue destroying neurons and glial cells in the cerebellum, brainstem, and spinal cord. Once nerve cells die, they cannot regenerate, making the damage permanent.
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That’s why sealing the CSF leak is time-critical. It won’t reverse existing damage, but it’s the only way to stop further nerve death and halt progression.
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3 — Triple-Positive Antiphospholipid Syndrome (APS)
Autoimmune disorder → the body produces all three major antiphospholipid antibodies → the most aggressive, high-risk form of APS → blood becomes dangerously prone to clotting.
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Leads to → blood clots, strokes, and deep vein thrombosis.
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Requires → warfarin (a strong blood thinner) to prevent fatal clotting.
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But → warfarin also greatly increases bleeding from my CSF leak, accelerating Infratentorial Superficial Siderosis (iSS).
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More bleeding → more iron buildup → greater nerve death → faster neurological decline.
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Creates a devastating medical paradox → the blood thinner that keeps me alive is also accelerating the bleeding that’s permanently damaging my brain.
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Breaking the Cycle
To recap:
CSF leak → causes bleeding
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Bleeding → deposits toxic iron, killing nerve cells, creating neuroinflammation
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Warfarin → greatly increases bleeding, speeding up irreversible brain damage
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The specialist intervention in Germany → my only chance to break this cycle.
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Why Time Is Critical
Infratentorial Superficial Siderosis (iSS), caused by an untreated cerebrospinal fluid (CSF) leak and accelerated by treatment with blood thinner warfarin, is a highly progressive and serious condition. The toxic iron buildup slowly destroys neurons in the brainstem, cerebellum, and spinal cord — areas that control essential functions like coordination, balance, swallowing, and even breathing.
When the underlying CSF leak isn’t found and permanently sealed, the bleeding continues — further accelerated by warfarin — iron keeps accumulating, and neurological function declines irreversibly. This rare convergence of conditions, driven by a relentlessly vicious cycle of accelerated bleeding, becomes life-threatening through the slow, cumulative loss of the brain and body’s most vital abilities.
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There Is Hope — A Clear Path Forward
I’ve fought ferociously — both physically and emotionally — to stay afloat. I even moved across the country trying to find the specialist treatment I urgently need within Sweden’s healthcare system. But every effort has led to the same outcome: trapped in a dead end, facing a rapidly worsening medical crisis. The knowledge level is so low for these conditions in Sweden, especially this rare convergence of all three, that it has been very difficult to even get anyone to take me seriously.
What the specialists in Freiburg are offering isn’t just treatment I’ve been unable to receive in Sweden — it’s a lifeline. A genuine chance to finally stop the devastating cycle that’s destroying my health, and to have a future.
The CSF Center at Freiburg University Hospital — one of the few places in the world equipped to handle complex cases like mine — is ready and willing to help.
If I can reach them.
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The Plan
Advanced Imaging to Confirm and Locate the Suspected CSF Leak
• High-resolution MRI using a CSF-leak protocol
• Dynamic myelography with CT or digital-subtraction techniques, as needed
• These advanced methods can pinpoint even the smallest spinal CSF leaks — the kind standard scans often miss
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Targeted Repair to Seal the Leak
• Definitive repair once the leak site is identified
• May involve a targeted epidural blood patch, fibrin sealant, or microsurgical closure
• Successfully sealing the leak will halt further bleeding and prevent irreversible neurological damage
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Transparency — Medical Documents
All medical documentation from Freiburg University Hospital is publicly available:
Freiburg Medical Report 1
Freiburg Medical Report 2
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Transparency — Cost Estimates
To access Freiburg’s diagnostics and treatment, I need to raise €13,000–€32,000.
Because Infratentorial Superficial Siderosis (iSS) is usually caused by a ventral dural tear that often requires surgical repair, this will likely be necessary once the leak is confirmed and located. To make that possible, I need access to the advanced imaging diagnostics available and offered in Freiburg.
Although surgery seems likely, I was advised to set a conservative initial goal to begin this critical diagnostic phase as soon as possible. Never having started a fundraiser before, I have no idea if this is the right call, but I figure that if I let transparency about every aspect of the treatment costs be my guiding star, things will work out.
Cost Estimate 1 (€13,080)
The first €13,000 will cover the diagnostic and imaging phase. Anything beyond that will go directly toward whatever treatment is deemed necessary to seal the cerebrospinal fluid (CSF) leak permanently.
Cost Estimate 2 (€32,000)
This total estimated cost of both diagnostics and treatment in Freiburg, including potential surgery, ranges up to €32,000. This covers every step necessary to diagnose and repair the underlying cause of the leak.
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My Promise to Donors
• I will try to repay every single life-saving donation where possible — no matter how long it takes me. Please save your donation email receipt. I mean it.
• All expenses paid for with donated funds will be thoroughly and transparently documented throughout this process.
• Should I receive reimbursement from Swedish social insurance for treatment abroad, and all medical expenses are covered, those funds will be returned to donors. Save that donation email receipt.
I have no interest in financial gain of any kind — I just want to survive and get my life back.
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What Your Donation Will Be Used For
Every donation directly funds the care at Freiburg University Hospital.
Your support will cover:
• Advanced MRI and dynamic myelography to confirm and pinpoint the exact site of the suspected CSF leak.
• Targeted repair — through a blood patch, fibrin sealant, or surgery — to seal the leak permanently.
• Travel and unforeseen expenses needed to access this urgent care in Germany.
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In Closing
Behind all these medical terms and descriptions of complex health conditions is a person whose life has been utterly destroyed — and in that destruction, the lives of those closest to me have also been deeply affected, leaving behind massive amounts of trauma, death anxiety, and shock. In the vacuum left by the healthcare system’s inability and indifference, I’ve been left to research the origins of my own health crisis while trying to manage the now impossible day-to-day life. Trying to understand what’s happening to me — and fighting for adequate healthcare — has become my entire existence.
I’m desperate for it to stop. I need it to stop.
The convergence of these conditions has created an existence of extremes. My days are spent lying in darkness with an intensely searing, stabbing headache; a concussion-like sensation whenever I move my head; and constant, surreal pressure inside my skull — all alongside an unrelenting sensitivity to light and sound.
It feels as if my brain were a heavy cannonball pressing down and scraping against my eyes, face, ears, temples, the back of my head, and my neck. All of this is accompanied by a loud, constant orchestra of tinnitus, nausea, severe memory and concentration problems, disturbing visual changes, and dizziness — every second of every minute of every hour of every day, for half a year now. The only things that offer relief are lying flat and caffeine. It’s an absurd and cruel condition that allows for no quality of life whatsoever.
That means no more watching TV. No more drawing digital art or creating photography. No more listening to or making music, playing video games, or picking up the guitar. No more Netflix and chill. No more actively following world events through podcasts or forums. No more enjoying a sunny day, or even tolerating the sound of normal conversation — let alone the loud, happy shrieks of people in the park outside.
All the things you take for granted — the things that make up your life and identity, that connect you to the world and to other people — suddenly become extremely painful.
There are no words for how devastatingly isolating that is.
My house, once full of light, sound, and life, has now become a tomb — a museum containing the remnants of the life I once had. I’m so far beyond tired of the darkness, the silence, and constantly having to lie down. I don’t know how much longer I can keep doing this — I’m physically and emotionally well beyond my breaking point.
This is an unnecessarily prolonged, life-shattering health emergency that no one should ever have to endure. This nightmare has gone on long enough and must reach a reasonable and humane conclusion — with me finally receiving the care my health crisis requires. I am, unfortunately, far from the only one needlessly suffering due to the low level of knowledge regarding the diagnosis and treatment of CSF leaks in Sweden, leaving many of us forced to seek care in Freiburg. It is utterly unacceptable.
I’m writing this with my best friend, Figaro, draped over my arm, snoring loudly and blissfully unaware of the absolute hellscape that’s now her human’s life. I worry about my future — and who will look after my baby if I don’t get help in time.
I also worry about my elderly mother, whose life my health crisis — and the absurd abandonment by Swedish healthcare — has also completely ravaged.
It’s understandable that some health conditions are complex and take time to properly diagnose and treat, but this is far beyond the pale.
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Many Small Streams Make a Great River
I know I’m just a tiny blip on the periphery — one of millions of people in need of urgent help in an increasingly chaotic world — but I humbly ask you to please consider donating if you’re able. No amount is too small. And please share this fundraiser — you might reach another person willing and able to help save my life.
The CSF team at Freiburg University Hospital have helped hundreds of people return to their lives, and they’re confident they can do the same for me.
I desperately want to be one of them.
Having hit nothing but dead ends in Sweden, raising enough money to access this vital care and treatment in Germany is my only chance to survive. I’m beyond grateful for any help in getting there.
Thank you, from the very bottom of my heart, for taking time out of your day to read this, and for your empathy — it means everything to me and to those dear to me at this devastating and critical junction in our lives.
THANK YOU
Signed,
James Richard Klingsborg (Rich), Birgitta, Leah, Dan, and Figaro ❤️
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Links and Helpful Resources
Infratentorial Superficial Siderosis
https://www.ucl.ac.uk/brain-sciences/ion/research/research-centres/ucl-stroke-research-centre/patients-carers-and-public/infratentorial-superficial-siderosis-central-nervous-system
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Short Video Explaining CSF Leaks (Facebook)
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Spinal Leak Foundation
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CSF Center — Universitätsklinikum Freiburg
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Antiphospholipid Syndrome
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831
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P.S. from me
I’m not going to pass up the opportunity to direct people toward a project I started with my friend Nathalie, called Millions Missing Podcast.
The goal was to create a free, extensive archive of unfiltered testimonies from people living with chronic illness — sharing what it’s actually like to live with conditions such as Myalgic Encephalomyelitis.
For health reasons, I had to step away from the podcast, but I want to return to that work once this is over. I’m proud to have been part of a platform that amplifies these incredibly important voices.
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Shout-Out Section
To My Mom
A special shout-out to my mom — without whom I couldn’t have made it this far. She came down to help me manage my impossible everyday hellscape when the hospital kept sending me home from the emergency room, leaving me to deteriorate further. She also helped me relocate to Stockholm, even though that extremely taxing journey turned out to be yet another dead end.
In spite of her own health challenges, she’s carried grocery bags, cleaned, helped me cook, and supported me emotionally through countless hellish days and nights of surreal pain.
I hope all this misery will soon have a happy ending — for both of us.
I love you, Mom. ❤️
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To Leah
Another heartfelt thank-you goes to Leah for her invaluable support in creating this fundraiser and helping provide vital information — information that’s guided me toward understanding the potential causes of my health crisis and where to turn for further help.
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To Dan
It takes a very rare and special kind of person to give the kind of emotional and practical support you have. I’ll forever be in your service and keep you close in my heart. I couldn’t ask for a better friend — nor could anyone.
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To Everyone Supporting
My deepest gratitude to everyone who’s been there for me and helped us get through this — and to everyone who donates to causes around the world.
To everyone who cares — about something, about someone — thank you.
