Fernanda fights Syringomyelia!
Donation protected
THANK YOU SO MUCH EVERYONE! WE HAVE THE MONEY FOR THE OPERATION ALREADY! ♥️♥️♥️
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Hi, my name is Fernanda, I am 27 years old and I was diagnosed with a degenerative disease in the spinal cord.
Just a summary if you do not want to face the long text: I have a cyst growing inside my spinal cord that destroys it and when it touches one side of the spinal cord it will leave my legs and arms paralysed. There is only one way to make the cyst stop growing, a surgery in a specialised clinic in Barcelona, and the cost is incredibly high, so I decided to speak publicly about it and ask for help.
For those who do not know me, I am an active person, very cheerful and hardworking, passionate about what I do and very attached to my friends. I work with children with special needs and I'm also a dancer. I have always done what I could to help the people around me, I was a volunteer clown for children with cancer and I also helped animal NGOs. For all I've been through and done in my life, I never imagined myself in the situation I find myself in today, needing to ask for help for myself.
A little over a year ago the pain started. A strange pain in the neck, the arm and the left leg, especially at the end of the day. At first, like all people, I thought it was stress or posture problems, I was finishing a master's degree, changing country, I had no job. In a few months, the symptoms spread and became unbearable. The pain no longer lets me sleep, my feet twist on their own as I walk, I feel an absurd tiredness all day long, making me want to just sleep, even though I do not get much sleep at night. Added to this were electric shocks, contractions and spasms of the muscles of the head causing intense headaches and muscles of the neck and shoulders, loss of strength of the left side of the body, tingling and numbness in both left hand and foot. Added to all the symptoms, came the anxiety and depression, because I could no longer do anything without pain. Not to mention constant memory loss and blurry vision. Working is torture and dancing, which was my best way to relax, became extremely painful. I don’t feel like doing too many things, having to be dragged by my boyfriend to get out of bed. There is not a day when the pain leaves me alone, sometimes it hurts absurdly, sometimes it only hurts a lot, it never hurts a little.
In the meantime, I visited physical therapists, orthopaedists, masseurs, acupuncturists, general practitioners. I took blood tests, x-ray of the spine, took anti-inflammatory drugs, antidepressants, medicines for neuropathic pains, I used arnica ointment, diclofenac ointment, I started using an orthopaedic neck pillow, I used a postural corrector, bags of hot water, I did stretches every morning, anyway, I had definitely tried everything and the symptoms got worse every month, so I started to worry about something more serious.
Where I currently live in England, it is very difficult to get a referral to a specialist, especially to ask for expensive tests that the government pays for, so everything took a lot of time. On a trip to Portugal to visit my family, in the midst of many pains, I decided to pay an appointment with a private neurologist who requested an MRI of the cervical spine. There I would find part of the answers to my questions. A cavity or syringomyelic cyst was found inside my spinal cord. The doctor from Portugal could not give me many answers, but he asked for three new MRIs, this time with contrast and of the entire spine, but I could not pay for these exams at that moment and decided again to try in England a referral, now with the diagnosis at hand.
It was very frustrating, the doctor here was not convinced that I needed a referral to a neurologist, even with the report from Portugal. She even laughed right in front of me, while searching in google for what syringomyelia is; but after a week she ended up deciding to give me the referral. I went to the neurologist and he identified my symptoms and some other problems related to the nervous system, so he made the request for the MRIs. On January 29 of this year I did the MRIs and had access to the images. I searched the internet for support groups for those who have this disease, which according to doctors is very rare, reaching 1 in every 100,000 people and is not widely known, and I discovered an institute that specialises in treating it. I sent my MRIs to them and from there came the bomb ... the diagnosis of Neuro-Cranial-Vertebral Syndrome or Filum's disease, Idiopathic Syringomyelia and Escoliosis and Chiari type 0. This disease is caused by tension in the spinal cord, causing the formation of a syringomyelic cyst that grows inside the spinal cord, irreversibly destroying it. My cyst is still small and growing vertically in my spinal cord. Its growth can lead to total loss of movement in the legs and arms and increased difficulty in breathing and swallowing, which means that in months or years, depending on how fast the disease progresses, I may be in a wheelchair.
The second bomb was to find out that the Institut Chiari & Syringomyelia & Escoliosis de Barcelona is the only place doing this surgery and it has a cost of €19.300. I talked with and read reports of people from several countries with the same disease that did the least invasive surgical procedure that the Institute offers, called Filum Terminale, which, in addition to stopping the growth of the cyst, is capable of reducing symptoms by more than 90% and I cried only by imagining having my life back, without having pain 24 hours a day and with the energy I used to have to work, dance and live.
On February 13th I decided to go to the Institute and make the first consultation, which lasted 2 hours. The doctor explained all the details about my illness and about the surgery. The growth of the cyst varies from person to person. There are people who take years to be paralysed, others are already paralysed after 1 month. The operation does not treat the consequences and damages already caused to the spinal cord, but treats the cause, managing to stop the growth of the cyst. However, the price is too high, and it would take more than 2 years to finish saving the money needed to the operation, by myself, which would be very risky, so my friends and family encouraged me to create this fundraising.
It was very difficult for me to accept this idea, because I know that there are many people in the world who also need help and because once you tell everyone about what is happening, things become even more real. But after many conversations and support from friends around the world, I have realised that sometimes we need to bow our head and accept that we need help. Me and my boyfriend will continue to raise the money and do everything possible to perform the surgical procedure as soon as possible. Although I do not have enough strength, I started looking after children before and after school work to help getting the money.
I would like to add here the values I have already paid for exams and appointments, besides what I currently must spend for surgery. I will also leave here (in the UPDATE part) all the reports, examinations and conversations with the institute of Barcelona (some in Portuguese, because they have service in all languages and I find it easier to explain my symptoms in my native language), their website with the contacts and testimonials of those who already had surgery. If you don’t find something, it’s because I do not have it yet, but I will post as soon as I get it.
We are doing everything we can, and I sincerely thank everyone who decides to help me in this race against this disease that is so little known by doctors around the world.
EXPENSES:
- Sum of Appointments with Neurologists in Portugal - € 135
- Cervical MRI - € 210
- Skull MRI - € 210
- Appointment Instituto de Barcelona - € 200
- Airline tickets - € 579.86
Institut Chiari Barcelona
Testimonials
—————————————————-
Hi, my name is Fernanda, I am 27 years old and I was diagnosed with a degenerative disease in the spinal cord.
Just a summary if you do not want to face the long text: I have a cyst growing inside my spinal cord that destroys it and when it touches one side of the spinal cord it will leave my legs and arms paralysed. There is only one way to make the cyst stop growing, a surgery in a specialised clinic in Barcelona, and the cost is incredibly high, so I decided to speak publicly about it and ask for help.
For those who do not know me, I am an active person, very cheerful and hardworking, passionate about what I do and very attached to my friends. I work with children with special needs and I'm also a dancer. I have always done what I could to help the people around me, I was a volunteer clown for children with cancer and I also helped animal NGOs. For all I've been through and done in my life, I never imagined myself in the situation I find myself in today, needing to ask for help for myself.
A little over a year ago the pain started. A strange pain in the neck, the arm and the left leg, especially at the end of the day. At first, like all people, I thought it was stress or posture problems, I was finishing a master's degree, changing country, I had no job. In a few months, the symptoms spread and became unbearable. The pain no longer lets me sleep, my feet twist on their own as I walk, I feel an absurd tiredness all day long, making me want to just sleep, even though I do not get much sleep at night. Added to this were electric shocks, contractions and spasms of the muscles of the head causing intense headaches and muscles of the neck and shoulders, loss of strength of the left side of the body, tingling and numbness in both left hand and foot. Added to all the symptoms, came the anxiety and depression, because I could no longer do anything without pain. Not to mention constant memory loss and blurry vision. Working is torture and dancing, which was my best way to relax, became extremely painful. I don’t feel like doing too many things, having to be dragged by my boyfriend to get out of bed. There is not a day when the pain leaves me alone, sometimes it hurts absurdly, sometimes it only hurts a lot, it never hurts a little.
In the meantime, I visited physical therapists, orthopaedists, masseurs, acupuncturists, general practitioners. I took blood tests, x-ray of the spine, took anti-inflammatory drugs, antidepressants, medicines for neuropathic pains, I used arnica ointment, diclofenac ointment, I started using an orthopaedic neck pillow, I used a postural corrector, bags of hot water, I did stretches every morning, anyway, I had definitely tried everything and the symptoms got worse every month, so I started to worry about something more serious.
Where I currently live in England, it is very difficult to get a referral to a specialist, especially to ask for expensive tests that the government pays for, so everything took a lot of time. On a trip to Portugal to visit my family, in the midst of many pains, I decided to pay an appointment with a private neurologist who requested an MRI of the cervical spine. There I would find part of the answers to my questions. A cavity or syringomyelic cyst was found inside my spinal cord. The doctor from Portugal could not give me many answers, but he asked for three new MRIs, this time with contrast and of the entire spine, but I could not pay for these exams at that moment and decided again to try in England a referral, now with the diagnosis at hand.
It was very frustrating, the doctor here was not convinced that I needed a referral to a neurologist, even with the report from Portugal. She even laughed right in front of me, while searching in google for what syringomyelia is; but after a week she ended up deciding to give me the referral. I went to the neurologist and he identified my symptoms and some other problems related to the nervous system, so he made the request for the MRIs. On January 29 of this year I did the MRIs and had access to the images. I searched the internet for support groups for those who have this disease, which according to doctors is very rare, reaching 1 in every 100,000 people and is not widely known, and I discovered an institute that specialises in treating it. I sent my MRIs to them and from there came the bomb ... the diagnosis of Neuro-Cranial-Vertebral Syndrome or Filum's disease, Idiopathic Syringomyelia and Escoliosis and Chiari type 0. This disease is caused by tension in the spinal cord, causing the formation of a syringomyelic cyst that grows inside the spinal cord, irreversibly destroying it. My cyst is still small and growing vertically in my spinal cord. Its growth can lead to total loss of movement in the legs and arms and increased difficulty in breathing and swallowing, which means that in months or years, depending on how fast the disease progresses, I may be in a wheelchair.
The second bomb was to find out that the Institut Chiari & Syringomyelia & Escoliosis de Barcelona is the only place doing this surgery and it has a cost of €19.300. I talked with and read reports of people from several countries with the same disease that did the least invasive surgical procedure that the Institute offers, called Filum Terminale, which, in addition to stopping the growth of the cyst, is capable of reducing symptoms by more than 90% and I cried only by imagining having my life back, without having pain 24 hours a day and with the energy I used to have to work, dance and live.
On February 13th I decided to go to the Institute and make the first consultation, which lasted 2 hours. The doctor explained all the details about my illness and about the surgery. The growth of the cyst varies from person to person. There are people who take years to be paralysed, others are already paralysed after 1 month. The operation does not treat the consequences and damages already caused to the spinal cord, but treats the cause, managing to stop the growth of the cyst. However, the price is too high, and it would take more than 2 years to finish saving the money needed to the operation, by myself, which would be very risky, so my friends and family encouraged me to create this fundraising.
It was very difficult for me to accept this idea, because I know that there are many people in the world who also need help and because once you tell everyone about what is happening, things become even more real. But after many conversations and support from friends around the world, I have realised that sometimes we need to bow our head and accept that we need help. Me and my boyfriend will continue to raise the money and do everything possible to perform the surgical procedure as soon as possible. Although I do not have enough strength, I started looking after children before and after school work to help getting the money.
I would like to add here the values I have already paid for exams and appointments, besides what I currently must spend for surgery. I will also leave here (in the UPDATE part) all the reports, examinations and conversations with the institute of Barcelona (some in Portuguese, because they have service in all languages and I find it easier to explain my symptoms in my native language), their website with the contacts and testimonials of those who already had surgery. If you don’t find something, it’s because I do not have it yet, but I will post as soon as I get it.
We are doing everything we can, and I sincerely thank everyone who decides to help me in this race against this disease that is so little known by doctors around the world.
EXPENSES:
- Sum of Appointments with Neurologists in Portugal - € 135
- Cervical MRI - € 210
- Skull MRI - € 210
- Appointment Instituto de Barcelona - € 200
- Airline tickets - € 579.86
Institut Chiari Barcelona
Testimonials
Organizer
Nanda Dias
Organizer
