Please help my brother to survive POEMS Syndrome
Donativo protegido
Dear friends,
I hope you can help to make a difference, even with the smallest donation we would be so grateful, as it will help us to get closer to our goal - which is to save my brothers life and to increase his quality of life.
My brother has been going in and out of hospital for the last 12 years and only 4,5 months ago he has been diagnosed with POEMS Syndrome, which is a very rare and horrific disease.
My brother has 2 little kids and he is declining rapidly, to the point that they needed to amputate his leg this week.
The disease is so rare that it has only been diagnosed in 1 out 1 Million people. There is still no concrete cure, neither is known what causes the disease, but there are some places outside of The Netherlands that have more experience in treating patience with POEMS Syndrome.
We are putting our hope on you:
In the Netherlands there are no specialists in POEMS Syndrome, and he is now in a progressed stage . My brother has been going in and out of hospitals for over 12 years and with an earlier diagnosis, his limbs could have been saved if proper action was taken.
With POEMS Syndrome being diagnosed, he is treated like an interesting case study and a subject to a thesis. I am hoping for your support so we can get him to a specialized clinic that can help manage the disease, slow down his decline and mostly help with the excruciating pain he is currently going through.
Why am I raising money:
I want my brother to get the right treatment, support and medication he needs, to survive and spend the last years of his live in the most qualitive way with his kids.
Treatments / needs:
-Admitted / treatments in the Heidelberg Clinic in Germany (private clinic and experienced with POEMS Syndrome).
-Leg prosthetics, invalid car with adjustments / wheel chair to give him freedom back after his treatments.
-Covering medication, treatments and costs that aren't covered by his insurance.
What is Poems Syndrome:
POEMS syndrome is a rare blood and cancer disorder that damages your nerves and affects other parts of your body. POEMS stands for these signs and symptoms:
Polyneuropathy. Extreme pain, numbness, tingling and weakness in your legs, hands — and difficulty breathing. This is an essential feature in the diagnosis of POEMS syndrome.
The cause of POEMS syndrome isn't known. But people with POEMS syndrome have an increased number of plasma cells. These cells produce an abnormal amount of a type of protein, which can damage other parts of the body.
POEMS syndrome can be misdiagnosed because the signs and symptoms mimic those of other disorders. POEMS syndrome progresses rapidly without treatment and can become life-threatening, so early diagnosis is important.
Any donation is welcome and I would like to thank you from the bottom of my heart. I'm so grateful for you to make a difference and to give him a chance.
Thank you very much,
Ilona
I hope you can help to make a difference, even with the smallest donation we would be so grateful, as it will help us to get closer to our goal - which is to save my brothers life and to increase his quality of life.
My brother has been going in and out of hospital for the last 12 years and only 4,5 months ago he has been diagnosed with POEMS Syndrome, which is a very rare and horrific disease.
My brother has 2 little kids and he is declining rapidly, to the point that they needed to amputate his leg this week.
The disease is so rare that it has only been diagnosed in 1 out 1 Million people. There is still no concrete cure, neither is known what causes the disease, but there are some places outside of The Netherlands that have more experience in treating patience with POEMS Syndrome.
We are putting our hope on you:
In the Netherlands there are no specialists in POEMS Syndrome, and he is now in a progressed stage . My brother has been going in and out of hospitals for over 12 years and with an earlier diagnosis, his limbs could have been saved if proper action was taken.
With POEMS Syndrome being diagnosed, he is treated like an interesting case study and a subject to a thesis. I am hoping for your support so we can get him to a specialized clinic that can help manage the disease, slow down his decline and mostly help with the excruciating pain he is currently going through.
Why am I raising money:
I want my brother to get the right treatment, support and medication he needs, to survive and spend the last years of his live in the most qualitive way with his kids.
Treatments / needs:
-Admitted / treatments in the Heidelberg Clinic in Germany (private clinic and experienced with POEMS Syndrome).
-Leg prosthetics, invalid car with adjustments / wheel chair to give him freedom back after his treatments.
-Covering medication, treatments and costs that aren't covered by his insurance.
What is Poems Syndrome:
POEMS syndrome is a rare blood and cancer disorder that damages your nerves and affects other parts of your body. POEMS stands for these signs and symptoms:
Polyneuropathy. Extreme pain, numbness, tingling and weakness in your legs, hands — and difficulty breathing. This is an essential feature in the diagnosis of POEMS syndrome.
The cause of POEMS syndrome isn't known. But people with POEMS syndrome have an increased number of plasma cells. These cells produce an abnormal amount of a type of protein, which can damage other parts of the body.
POEMS syndrome can be misdiagnosed because the signs and symptoms mimic those of other disorders. POEMS syndrome progresses rapidly without treatment and can become life-threatening, so early diagnosis is important.
Any donation is welcome and I would like to thank you from the bottom of my heart. I'm so grateful for you to make a difference and to give him a chance.
Thank you very much,
Ilona
Organizador
Ilona Van Der Laan
Organizador