Saving me from Marfan syndrome
Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
you’ll get by......
You can contact me via Email (email@example.com)
My name is Toni Kähärä, I am 34 years old and 4 years ago I was diagnosed with Marfan Syndrome. I also live with Chiari Malformation.
My primary illness, Marfan Syndrome, places me at constant risk of heart attacks and sudden death. Marfan Syndrome is rare, and neither the public healthcare systems in Finland or Estonia can help me beyond heart & blood pressure medication as treatment for this condition.
I recently underwent brain surgery for Chiari Malformation. CM causes the lower part of the brain to push onto the spinal canal. I was told surgery would have a 50/50 chance of improving the condition, but in my case, it sadly did not help.
There is no cure for either of these terminal illnesses. Marfan Syndrome in particular can cause sudden death because of a greatly increased likelihood of heart attacks and high risk of the aorta (the largest artery in the body) tearing or rupturing. Chiari Malformation leaves me in constant pain and I rarely find the strength to even get out of my bed. And though I am mostly bedridden, I am barely able to sleep due to the intensity of the pain. On a very rare good day I can barely walk the length of a street.
I am not ready to die.
I am requesting your help because my pension barely pays the rent and I do not have a family or another safety net to support me financially.
Public healthcare only pays for general practitioners and painkillers that do not really work. Seeing a Marfan expert who could help to improve my condition requires private funding.
While I cannot be cured, treatment could improve my quality of life and extend my life expectancy considerably.
The bare minimum sum to get treatment is five thousand euros. I have calculated that this is what it would take to
1) Get an appointment with several relevant specialist doctors
2) Pay medical bills for things like MRI, CT-scan.
3) Allow me to purchase a portable ECG device called a Holter Monitor and possibly a Vagus Nerve Stimulator.
4) Cover medicine costs of about €1200 a year.
I am originally from Finland but moved to Tartu, Estonia to be with my partner who is studying here. Before 30, I led a normal life. I had a job as an IT Technician, I had dreams, I used to enjoy long walks, dancing and socializing, and I enjoyed being creative. Then I fell seriously ill and slowly but surely, my condition started to worsen. It started with heavy chest pain. Via public healthcare, I was first falsely diagnosed with panic disorder and put on depression medication. I went through several psychological tests only to come to the result that I was neither depressed nor had a panic disorder. Still, the doctors did not take my symptoms seriously. I had extremely painful heart issues, I repeatedly lost feeling in my arms and legs, and I fainted on regular basis. I had to fight my way into getting an MRI scan and a year later, I finally saw a specialist in genetic disorders. Finally, after two years, I was diagnosed with Marfan Syndrome and Chiari Malformation. Sadly, I was told that neither of my conditions are curable and that I would have to learn to live with them. Within the last 4 years, my situation has gone from dire to hopeless. I have had multiple heart attacks and have undergone brain surgery. The public healthcare system now cannot do very much for me. I’ve been given painkillers, heart medication, blood pressure medication, and muscle relaxants that have done little to alleviate my symptoms. I was informed that it is not likely that I will make it to 40 years old.
My daily life is filled with agony. I do not get enough sleep because even when fully medicated, my pain keeps me awake throughout most of the night. On a very rare good day, I can barely walk the length of a street. I have completely lost my autonomy to Marfan Syndrome and have become incapable of doing everyday tasks such as laundry, doing the dishes, going shopping or even cleaning. But... I have not given up. I am aware that proper treatment can give me an almost normal life and I want to do anything and everything to have a chance at beating this disorder and live a life free of agony.
If you have any questions or doubts, please do not hesitate to contact me. I am more than willing to provide medical documents and a doctor’s statement. My friends have written testimonials and will provide you with their contact information if needed. Every penny you donate will be spent on doctors’ fees, transportation, medicine, and medical exams. If we achieve my goal, I will also be able to purchase a wheelchair that will give me the mobility to leave my apartment from time to time. Without the individualized treatment of a specialist I will continue to suffer and I will eventually die of cardiac arrest.
If you wish to know more, I urge you to contact me via Email (firstname.lastname@example.org)
I really thank you from the bottom of my heart for considering my cause. Whether you donate, share my story and the link to this page with your friends, or simply if you care, I thank you for your support! Thank you for providing me with hope and a chance at a better life.
You can find more information about my illnesses here:
I've been really unwell for a long time now, and recently I was diagnosed with yet another condition, due to using a stomach pain medicine called Metamizole. It has caused a somewhat rare reaction called agranulocytosis, which basically means my immune system is down completely. I'm extremely prone to infections and I'm not allowed to eat any fresh foods nor be in contact with other people. I am beyond frustrated with the doctor prescribing such medicine for someone who is already at risk of dying. This makes things three times more serious and the high grade fever has been coming and going for almost a month now. I hope to fight this thing and I hope my immune system will get back to normal.
As for the situation; it's still the same if not a little worse. I do get extremely frustrated with not finding the funds to get proper help and while each donation makes me happy, I've yet to see a larger one. I have send thousands of emails asking for help and there has not been any response. I am clueless to what to do.
I attached a photo of my most recent brain scan. The circled area shows craniocervical instability and on the right there is an obvious Chiari Malformation 1,5cm in size post-operation but with no results. Craniocervical instability usually comes with EDS but in my case it was Marfan, which is a bit unusual.
Anyway, I am still somewhat alive tho I'm bound to bed rest and occasional 5/10 pain level moments when I can go brush my teeth and small things like that. Otherwise just trying to keep myself together by watching documentaries of astronomy or nature. All I want is to be functional, but I think my body is giving up. Nothing works and everything hurts.
I've sent countless emails asking for funding but each and every company has responded with "We're sorry but we have chosen our charities already". A company called Verkkokauppa.Com is well known for
charitable acts but they haven't even responded to me. My spouse also sent them an email and begged for help-nothing.
Some people seem to misunderstand my living situation. Just to clarify again: I am a Finnish citizen. I am not staying in Estonia permanently. I am here for about 2 years with my husband, due to his studies. We both have addresses in Finland and that is where we will return. That does not affect my need of urgent help. Due to the complexity of my disorders I do need private sector doctors and proper professionals who can help me and save my life.
My health has been going worse, altho I say this all the time, It's true. I have this permanent pressure on my right side and sometimes it hurts a lot. I can't sleep on that side at all. I do not know what it is but it feels like my aorta. People with Marfan Syndrome are more prone to feel their veins, while healthy individuals do not. It's just another symptom in the ocean of agony, so I can deal with it. Other than that, not much more to update. Pain, more pain and just really tired.
Sometimes at night I do get a bit panicy when the symptoms overwhelm me and no pill helps. Living with chronic pain means to learn to smile through the pain, but sometimes you don't have the strength anymore and you just break down. Pretending to be fine when your body is in chaos and you don't know what is going on... It's tireding. And sometimes dangerous to ignore.