My son Richard urgently needs specialist treatment in Germany to prevent further irreversible brain and spinal cord damage.
For the past five months, he has been mostly bedridden, living in excruciating pain as his condition continues to deteriorate. Every single day without treatment causes more permanent neurological damage that cannot be undone, making timely treatment absolutely critical.
⸻
A Critical Diagnosis: CSF Leak and Superficial Siderosis
According to the CSF leak specialists at Freiburg University Hospital in Germany, Richard suffers from a highly suspected cerebrospinal fluid (CSF) leak, which, due to being left untreated, has led to Infratentorial Superficial Siderosis—a serious neurological condition that gradually damages the nervous system.
⸻
Failed by the local Healthcare System in Sweden
The level of knowledge regarding the diagnosis and treatment of CSF leaks is, regrettably, very low in Sweden. However, this lack of knowledge alone does not fully explain why such an urgent health crisis has been repeatedly dismissed and not taken seriously by the local healthcare system. Despite multiple visits to the ER, during which his alarming deterioration was clearly evident, he did not receive the proper medical care he required. Instead, he was sent home, allowing his condition to needlessly worsen.
⸻
Specialists in Germany Found What Local Hospitals Missed
When Richard was finally able to get MRI imaging of his brain and spine, the local hospital deemed the images “unremarkable” for signs of CSF leaks.
He then sent his scans to the CSF leak specialists at Freiburg University Hospital in Germany, who were able to identify Superficial Siderosis, providing clear, objective evidence of the likely origins of his health crisis.
⸻
A Treatment Plan Exists — But Financial Barriers Stand in the Way
The CSF specialists at Freiburg University Hospital have developed a detailed treatment plan for Richard. They recommend that he travel to their clinic for advanced imaging according to their internal MRI standards, as well as additional examinations using dynamic myelography.
Their goal is to confirm the suspected CSF leak, pinpoint its exact location, and provide targeted treatment to permanently seal it. Unfortunately, financial hurdles are preventing him from accessing this life-saving care.
⸻
A Mother’s Perspective
As Richard’s mother, it has been heartbreaking to watch my son lose so much of the life he once had. He is in constant pain, mostly confined to bed, and every day I see how hard he fights just to hold on.
No parent ever imagines being in a position where their child is facing a serious and urgent health crisis, only to be disbelieved and repeatedly sent home from the emergency room without help, growing sicker at home.
This has been an incredibly difficult time—not only for my son, but for all of us who care about him.
⸻
What a CSF Leak Does to the Body
A CSF leak occurs when a tear or hole develops in the dura mater — the tough protective membrane surrounding the brain and spinal cord. This allows cerebrospinal fluid, which cushions and protects the brain and nervous system, to escape.
When fluid pressure drops, the brain literally sags inside the skull, leading to:
• Severe headaches that worsen when upright and ease when lying down
• Sensitivity to light and sound
• Nausea and dizziness
• Hearing changes and tinnitus (ringing in the ears)
• Neck pain and other neurological symptoms
This short video explains what happens inside the brain and spine with a CSF leak
Watch here (Facebook): https://www.facebook.com/share/v/15ZzLoMdha/?mibextid=wwXIfr
⸻
Why Untreated CSF Leaks Can Be So Dangerous
When a CSF leak is left untreated — as in Richard’s case — small amounts of blood can slowly leak into the fluid surrounding the brain and spinal cord. As this blood breaks down, it releases iron, which gradually builds up on the surface of the nervous system.
This iron acts like a toxin, causing persistent inflammation, oxidative stress, and irreversible nerve cell damage. Over time, this leads to Superficial Siderosis, a progressive and debilitating neurological condition.
Richard’s situation is made even more complicated as he suffers from triple-positive Antiphospholipid Syndrome — a rare blood clotting disorder that requires a strong blood thinner called Warfarin (Coumadin).
This medication increases the risk of bleeding into the CSF, which can accelerate the buildup of iron and speed up the progression of nerve damage caused by Superficial Siderosis.
⸻
Why Superficial Siderosis Is So Serious
Superficial Siderosis is a rare, progressive neurological condition that can cause:
• Permanent hearing loss or deafness
• Loss of balance and coordination
• Limb weakness and numbness
• Bladder and bowel dysfunction
• Cognitive decline or dementia
• Seizures and other serious complications
Once nerve tissue is damaged by iron, it cannot be repaired. The only way to stop further damage is to find and seal the CSF leak as soon as possible.
⸻
Why Richard Needs Treatment in Germany
Superficial Siderosis is almost always caused by tiny ventral dural leaks in the spine. These leaks are often only millimeters wide and extremely difficult to locate.
While standard treatments like epidural blood patches can be successful in some cases of CSF leaks, they are shown to not be as effective for dural tears. In cases like Richard’s, specialized surgery is most likely required to identify and permanently repair the leak.
This is far from routine neurosurgery. It is a rare and complex procedure that requires advanced imaging and surgeons with highly specific expertise in CSF leaks. Only a handful of centers worldwide have the experience necessary to perform this surgery.
At Freiburg University Hospital, a world-renowned team of CSF leak specialists has already reviewed Richard’s scans, confirmed the Superficial Siderosis diagnosis, and outlined a plan for further diagnostics and treatment.
We want him to be able to access that treatment.
⸻
Medical documentation:
• Freiburg Medical Report 1
https://drive.google.com/file/d/1C0Sb1-BqtlsCk5FwdsWVRzugA8_Ug1fH/view?usp=drivesdk
• Freiburg Medical Report 2
https://drive.google.com/file/d/1a6tglRhSaNrlY8svOFRi26Mvt-TPwrzw/view?usp=drivesdk
⸻
The Cost of Treatment
The Freiburg clinic has provided two cost estimates, which vary depending on what the specialists find during the advanced imaging and the treatment required.
The total cost is estimated to be between €13,080 and €32,000.
• Cost estimate 1
https://drive.google.com/file/d/1phZB9Ev59I9DeX28D9WfodIunxmAfVkh/view?usp=drivesdk
• Cost estimate 2
https://drive.google.com/file/d/1OjsiQtBCxQUBOyAmwjHknPVIDVfRf3oP/view?usp=drivesdk
Since Superficial Siderosis is usually caused by a ventral dural tear, it is highly likely that surgery will be necessary. Because the exact treatment and cost are not yet certain, we have chosen a conservative initial fundraising goal to start, with the hope that every contribution brings Richard closer to the care he urgently needs.
Every single donation — no matter how small — and every share of this fundraiser brings him closer to life-saving treatment.
If reimbursement for care abroad is granted by Swedish Social Insurance, those funds will be returned to donors.
Please remember to save your donation email receipts if you wish to receive any potential reimbursement.
⸻
Closing remarks from Richard
This year marks 25 years of living with Myalgic Encephalomyelitis (ME) and what I now understand was likely undiagnosed Hypermobile Ehlers-Danlos syndrome (hEDS)—a condition that increases the risk of Cerebrospinal Fluid leak (CSF leak).
In May, I developed symptoms of what we now know is a highly suspected CSF leak. Left untreated, it has caused Infratentorial Superficial Siderosis, which seems to be progressing unusually rapidly, possibly accelerated by the blood thinner I take for triple-positive Antiphospholipid syndrome. Despite repeated ER visits in Sweden, my condition was continuously dismissed.
Specialists at Freiburg University Hospital in Germany reviewed my scans and confirmed Superficial Siderosis, strongly believing it’s caused by a CSF leak. They want me to come for advanced imaging and possible surgery to seal the leak—but I can’t afford to go.
Aside from the pressure-cooker headache and the constant, loud tinnitus, the extreme sensitivity to light and sound is, without a doubt, the most brutal part of this condition.
That means no more watching TV. No more drawing digital art or creating virtual 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 unbearably 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 of the remnants of the life I once had. I am 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 am well past my breaking point.
I have to believe there is a way back. The specialists in Freiburg believe there is, and they have helped many people return to their lives.
I desperately want to be one of them.
With that, I humbly ask you to consider contributing to and sharing this fundraiser—only to the extent that you feel comfortable and are able.
Words are genuinely not enough to thank you for reading all the way through, let alone considering donating and sharing the fundraiser, but you have my eternal gratitude nonetheless.
You are literally saving my life.
Relevant Links & Helpful Resources
Superficial Siderosis
• Overview and clinical information (PMC):
https://pmc.ncbi.nlm.nih.gov/articles/PMC11235863/
⸻
CSF Leak Resources
• Short explanatory video (Facebook):
https://www.facebook.com/share/v/15ZzLoMdha/?mibextid=wwXIfr
• Spinal CSF Leak Foundation:
https://spinalcsfleak.org
⸻
CSF Leak Clinic
• Universitätsklinikum Freiburg • Official CSF Center (English):
https://www.uniklinik-freiburg.de/neurochirurgie/schwerpunkte/csf-center/csf-center-en/sih-en.html
⸻
Antiphospholipid Syndrome
• Mayo Clinic — Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/diagnosis-treatment/drc-20355836
⸻
Information in Swedish (SIH & APS)
• Spontan intrakraniell hypotoni – Neuroförbundet:
https://neuro.se/diagnoser/spontan-intrakraniell-hypotoni-sih/
• ABC om spontan intrakraniell hypotension – Läkartidningen:
https://lakartidningen.se/vetenskap/abc-om-spontan-intrakraniell-hypotension/
• Nya klassifikationskriterier för antifosfolipidsyndrom – Läkartidningen:
https://lakartidningen.se/vetenskap/nya-klassifikationskriterier-for-antifosfolipidsyndrom/
P.S. from Richard
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—a condition where the patient is often disbelieved and dismissed, rather than taken seriously and provided proper healthcare.
For health reasons, I had to step away from the podcast, which absolutely breaks my heart. But I hope to return to that work once this is over, and I’m proud to have been part of a platform that amplifies these incredibly important voices.
Please have a listen and share: https://linktr.ee/millionsmissingpodcast
⸻
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.
In spite of her own health challenges, she carried grocery bags, cleaned, helped me cook, and supported me emotionally through countless hellish days and nights of surreal pain.
I love you, Mom. ❤️
⸻
To Leah
Another heartfelt thank-you goes to Leah for her invaluable support in creating this fundraiser and helping provide vital information — information that guided me toward understanding the potential causes of my health crisis, and where to turn for further help.
⸻
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.
For the past five months, he has been mostly bedridden, living in excruciating pain as his condition continues to deteriorate. Every single day without treatment causes more permanent neurological damage that cannot be undone, making timely treatment absolutely critical.
⸻
A Critical Diagnosis: CSF Leak and Superficial Siderosis
According to the CSF leak specialists at Freiburg University Hospital in Germany, Richard suffers from a highly suspected cerebrospinal fluid (CSF) leak, which, due to being left untreated, has led to Infratentorial Superficial Siderosis—a serious neurological condition that gradually damages the nervous system.
⸻
Failed by the local Healthcare System in Sweden
The level of knowledge regarding the diagnosis and treatment of CSF leaks is, regrettably, very low in Sweden. However, this lack of knowledge alone does not fully explain why such an urgent health crisis has been repeatedly dismissed and not taken seriously by the local healthcare system. Despite multiple visits to the ER, during which his alarming deterioration was clearly evident, he did not receive the proper medical care he required. Instead, he was sent home, allowing his condition to needlessly worsen.
⸻
Specialists in Germany Found What Local Hospitals Missed
When Richard was finally able to get MRI imaging of his brain and spine, the local hospital deemed the images “unremarkable” for signs of CSF leaks.
He then sent his scans to the CSF leak specialists at Freiburg University Hospital in Germany, who were able to identify Superficial Siderosis, providing clear, objective evidence of the likely origins of his health crisis.
⸻
A Treatment Plan Exists — But Financial Barriers Stand in the Way
The CSF specialists at Freiburg University Hospital have developed a detailed treatment plan for Richard. They recommend that he travel to their clinic for advanced imaging according to their internal MRI standards, as well as additional examinations using dynamic myelography.
Their goal is to confirm the suspected CSF leak, pinpoint its exact location, and provide targeted treatment to permanently seal it. Unfortunately, financial hurdles are preventing him from accessing this life-saving care.
⸻
A Mother’s Perspective
As Richard’s mother, it has been heartbreaking to watch my son lose so much of the life he once had. He is in constant pain, mostly confined to bed, and every day I see how hard he fights just to hold on.
No parent ever imagines being in a position where their child is facing a serious and urgent health crisis, only to be disbelieved and repeatedly sent home from the emergency room without help, growing sicker at home.
This has been an incredibly difficult time—not only for my son, but for all of us who care about him.
⸻
What a CSF Leak Does to the Body
A CSF leak occurs when a tear or hole develops in the dura mater — the tough protective membrane surrounding the brain and spinal cord. This allows cerebrospinal fluid, which cushions and protects the brain and nervous system, to escape.
When fluid pressure drops, the brain literally sags inside the skull, leading to:
• Severe headaches that worsen when upright and ease when lying down
• Sensitivity to light and sound
• Nausea and dizziness
• Hearing changes and tinnitus (ringing in the ears)
• Neck pain and other neurological symptoms
This short video explains what happens inside the brain and spine with a CSF leak
Watch here (Facebook): https://www.facebook.com/share/v/15ZzLoMdha/?mibextid=wwXIfr
⸻
Why Untreated CSF Leaks Can Be So Dangerous
When a CSF leak is left untreated — as in Richard’s case — small amounts of blood can slowly leak into the fluid surrounding the brain and spinal cord. As this blood breaks down, it releases iron, which gradually builds up on the surface of the nervous system.
This iron acts like a toxin, causing persistent inflammation, oxidative stress, and irreversible nerve cell damage. Over time, this leads to Superficial Siderosis, a progressive and debilitating neurological condition.
Richard’s situation is made even more complicated as he suffers from triple-positive Antiphospholipid Syndrome — a rare blood clotting disorder that requires a strong blood thinner called Warfarin (Coumadin).
This medication increases the risk of bleeding into the CSF, which can accelerate the buildup of iron and speed up the progression of nerve damage caused by Superficial Siderosis.
⸻
Why Superficial Siderosis Is So Serious
Superficial Siderosis is a rare, progressive neurological condition that can cause:
• Permanent hearing loss or deafness
• Loss of balance and coordination
• Limb weakness and numbness
• Bladder and bowel dysfunction
• Cognitive decline or dementia
• Seizures and other serious complications
Once nerve tissue is damaged by iron, it cannot be repaired. The only way to stop further damage is to find and seal the CSF leak as soon as possible.
⸻
Why Richard Needs Treatment in Germany
Superficial Siderosis is almost always caused by tiny ventral dural leaks in the spine. These leaks are often only millimeters wide and extremely difficult to locate.
While standard treatments like epidural blood patches can be successful in some cases of CSF leaks, they are shown to not be as effective for dural tears. In cases like Richard’s, specialized surgery is most likely required to identify and permanently repair the leak.
This is far from routine neurosurgery. It is a rare and complex procedure that requires advanced imaging and surgeons with highly specific expertise in CSF leaks. Only a handful of centers worldwide have the experience necessary to perform this surgery.
At Freiburg University Hospital, a world-renowned team of CSF leak specialists has already reviewed Richard’s scans, confirmed the Superficial Siderosis diagnosis, and outlined a plan for further diagnostics and treatment.
We want him to be able to access that treatment.
⸻
Medical documentation:
• Freiburg Medical Report 1
https://drive.google.com/file/d/1C0Sb1-BqtlsCk5FwdsWVRzugA8_Ug1fH/view?usp=drivesdk
• Freiburg Medical Report 2
https://drive.google.com/file/d/1a6tglRhSaNrlY8svOFRi26Mvt-TPwrzw/view?usp=drivesdk
⸻
The Cost of Treatment
The Freiburg clinic has provided two cost estimates, which vary depending on what the specialists find during the advanced imaging and the treatment required.
The total cost is estimated to be between €13,080 and €32,000.
• Cost estimate 1
https://drive.google.com/file/d/1phZB9Ev59I9DeX28D9WfodIunxmAfVkh/view?usp=drivesdk
• Cost estimate 2
https://drive.google.com/file/d/1OjsiQtBCxQUBOyAmwjHknPVIDVfRf3oP/view?usp=drivesdk
Since Superficial Siderosis is usually caused by a ventral dural tear, it is highly likely that surgery will be necessary. Because the exact treatment and cost are not yet certain, we have chosen a conservative initial fundraising goal to start, with the hope that every contribution brings Richard closer to the care he urgently needs.
Every single donation — no matter how small — and every share of this fundraiser brings him closer to life-saving treatment.
If reimbursement for care abroad is granted by Swedish Social Insurance, those funds will be returned to donors.
Please remember to save your donation email receipts if you wish to receive any potential reimbursement.
⸻
Closing remarks from Richard
This year marks 25 years of living with Myalgic Encephalomyelitis (ME) and what I now understand was likely undiagnosed Hypermobile Ehlers-Danlos syndrome (hEDS)—a condition that increases the risk of Cerebrospinal Fluid leak (CSF leak).
In May, I developed symptoms of what we now know is a highly suspected CSF leak. Left untreated, it has caused Infratentorial Superficial Siderosis, which seems to be progressing unusually rapidly, possibly accelerated by the blood thinner I take for triple-positive Antiphospholipid syndrome. Despite repeated ER visits in Sweden, my condition was continuously dismissed.
Specialists at Freiburg University Hospital in Germany reviewed my scans and confirmed Superficial Siderosis, strongly believing it’s caused by a CSF leak. They want me to come for advanced imaging and possible surgery to seal the leak—but I can’t afford to go.
Aside from the pressure-cooker headache and the constant, loud tinnitus, the extreme sensitivity to light and sound is, without a doubt, the most brutal part of this condition.
That means no more watching TV. No more drawing digital art or creating virtual 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 unbearably 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 of the remnants of the life I once had. I am 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 am well past my breaking point.
I have to believe there is a way back. The specialists in Freiburg believe there is, and they have helped many people return to their lives.
I desperately want to be one of them.
With that, I humbly ask you to consider contributing to and sharing this fundraiser—only to the extent that you feel comfortable and are able.
Words are genuinely not enough to thank you for reading all the way through, let alone considering donating and sharing the fundraiser, but you have my eternal gratitude nonetheless.
You are literally saving my life.
Relevant Links & Helpful Resources
Superficial Siderosis
• Overview and clinical information (PMC):
https://pmc.ncbi.nlm.nih.gov/articles/PMC11235863/
⸻
CSF Leak Resources
• Short explanatory video (Facebook):
https://www.facebook.com/share/v/15ZzLoMdha/?mibextid=wwXIfr
• Spinal CSF Leak Foundation:
https://spinalcsfleak.org
⸻
CSF Leak Clinic
• Universitätsklinikum Freiburg • Official CSF Center (English):
https://www.uniklinik-freiburg.de/neurochirurgie/schwerpunkte/csf-center/csf-center-en/sih-en.html
⸻
Antiphospholipid Syndrome
• Mayo Clinic — Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/diagnosis-treatment/drc-20355836
⸻
Information in Swedish (SIH & APS)
• Spontan intrakraniell hypotoni – Neuroförbundet:
https://neuro.se/diagnoser/spontan-intrakraniell-hypotoni-sih/
• ABC om spontan intrakraniell hypotension – Läkartidningen:
https://lakartidningen.se/vetenskap/abc-om-spontan-intrakraniell-hypotension/
• Nya klassifikationskriterier för antifosfolipidsyndrom – Läkartidningen:
https://lakartidningen.se/vetenskap/nya-klassifikationskriterier-for-antifosfolipidsyndrom/
P.S. from Richard
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—a condition where the patient is often disbelieved and dismissed, rather than taken seriously and provided proper healthcare.
For health reasons, I had to step away from the podcast, which absolutely breaks my heart. But I hope to return to that work once this is over, and I’m proud to have been part of a platform that amplifies these incredibly important voices.
Please have a listen and share: https://linktr.ee/millionsmissingpodcast
⸻
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.
In spite of her own health challenges, she carried grocery bags, cleaned, helped me cook, and supported me emotionally through countless hellish days and nights of surreal pain.
I love you, Mom. ❤️
⸻
To Leah
Another heartfelt thank-you goes to Leah for her invaluable support in creating this fundraiser and helping provide vital information — information that guided me toward understanding the potential causes of my health crisis, and where to turn for further help.
⸻
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.
Co-organizers3
Birgitta Abrahamsson
Organizer
Kalvsvik
James Richard Klingsborg
Beneficiary
Leah Leavitt
Co-organizer