- L
This is my 29-year-old relative Mathilda.
A previously happy, creative, adventurous, dancing young woman. However, now she’s been very ill for many years, without any proper care. The worst since nine months back, where she hasn’t even been able to sit upright, without getting a pounding headache amongst numerous other severe symptoms. They have mistrusted her and refused to do the proper medical examinations, even though her symptoms match a neurological diagnosis that’s called Spontaneous Intracranial Hypotension (SIH). Which means that there is a leak of cerebrospinal fluid in the spinal canal, which creates a low cerebrospinal fluid volume and further makes it difficult for the individual to be in an upright position, as this creates low pressure in the brain.
A risk factor for suffering from this serious condition is if you live with some form of connective tissue diagnosis, because leaks occurs in the dura mater (the hard covering of the brain that consists of connective tissue). Mathilda has previously been diagnosed with h-EDS (hypermobile Ehlers Danlos syndrome), which is a connective tissue syndrome. Despite this connection, the healthcare system has not taken this into account, but has distrusted her and not helped her get proper care that she is in desperate need of.
After many months of struggle where she finally believed she had fought her way to the right help, they have not been able to identify the fault.
The situation is becoming more and more critical, as it has progressed to the point where the headache is no longer relieved more than slightly when she lies down. At first it disappeared in this position. There is also no direct medication for this severe condition, only surgery or other procedures is needed to close the leak. She is therefore only on Paracetamol for this severe pain condition and therefore needs help as soon as possible, as this is unbearable.
However, now she has contacted Europe's SIH specialists in Freiburg, where they have now analyzed Mathilda's MRI images and believe they see clear signs of SIH. They have assessed the risk of her being affected by the condition as a 6 on the Bern score, which means a high chance of them finding the leak. They also believe that Mathilda may have suffered from this condition for much longer than she herself suspected and contributed to her already severely disabling medical condition.
Therefore, they believe it is of utmost importance that Mathilda comes down to them as soon as possible and undergoes relevant examinations, investigations and further procedures or surgery.
Due to the low level of knowledge about this condition and the lack of research, local hospitals often fail to detect or treat spinal leaks. However, the few specialized centers in the world have managed to help people who have been disabled for many years. People who were mistrusted and did not receive relevant care in time have been given a new chance at life, after being bedridden and unable to sit up for several years.
Therefore, it is of utmost importance that Mathilda can get this chance to regain her quality of life and no longer have to lie down, day in and day out, and watch her youth pass by, forgotten in a bed.
There are many of us who support and encourage her to persevere when the healthcare isn’t enough and helps her, but she is having a very tough time.
To neither even being able to sit up anymore, nor being able to go out for over nine months is incredibly difficult for an individual who actually loves to be active and creative.
She feels socially isolated and forgotten. As if her body is a prison and she is wasting away.
We want nothing more than to help her feel better and get an ounce of vitality back.
Therefore, we appeal to you to help us help her get the proper care and a brighter future.
UPDATED!
The cost estimate from the University Hospital in Freiburg is 32,000 euros.
However, the amount is variable, as there may be additional costs for the treatment afterwards.
In addition, there are costs for;
- Flight tickets back and forth
- Accomodation
- Food costs
- Medical costs
- Transfer back and forth to the airport
- Any medical aids
- Unforeseen costs
I, who am responsible for the fundraiser in Sweden is called Laima and is the mother to Mathilda.
I, who am responsible for the fundraiser in the US is called Nura and is the godsister to Mathilda.
PLEASE NOTE: The smiling pictures of Mathilda were taken before she became bedridden!
Relevant links about the condition and the university hospital;
https://lakartidningen.se/klinik-och-vetenskap-1/medicinens-abc/2023/10/abc-om-spontan-intrakraniell-hypotension/#comments