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2018 my older sister was diagnosed with HSP. Hereditary spastic paraplegias (HSP) are a group of rare inherited diseases whose main feature is a progressive gait disorder. The disease often presents in childhood and gets progressively worse with time. The affected experience difficulties in walking until it is often not possible to walk at all. As there is no causal treatment currently available, therapies focus on maintaining mobility as long as possible and improve quality of life.
Since the diagnosis my sister has been trying to slow down the progress of the disease with rehabilitation sports, swimming and walking and physical therapy. A diagnosis like that always changes a lot for the affected and the relatives. It sometimes also leaves one feeling rather helpless.
To support her, I am therefore walking the Way of Saint James, to raise awareness for the disease and collect donations for HSP research in cooperation with the Tom Wahlig Foundation.
If you want to know more about HSP and the Tom Wahlig Foundation, you can visit their website here.
If you want to support me and my cause, you can share this blog with your family and friends or you can support HSP research with a donation. You can find the bank details below:
2018 my older sister was diagnosed with HSP. Hereditary spastic paraplegias (HSP) are a group of rare inherited diseases whose main feature is a progressive gait disorder. The disease often presents in childhood and gets progressively worse with time. The affected experience difficulties in walking until it is often not possible to walk at all. As there is no causal treatment currently available, therapies focus on maintaining mobility as long as possible and improve quality of life.
Since the diagnosis my sister has been trying to slow down the progress of the disease with rehabilitation sports, swimming and walking and physical therapy. A diagnosis like that always changes a lot for the affected and the relatives. It sometimes also leaves one feeling rather helpless.
To support her, I am therefore walking the Way of Saint James, to raise awareness for the disease and collect donations for HSP research in cooperation with the Tom Wahlig Foundation.
If you want to know more about HSP and the Tom Wahlig Foundation, you can visit their website here.
If you want to support me and my cause, you can share this blog with your family and friends or you can support HSP research with a donation. You can find the bank details below:
Donations Account
Tom Wahlig Stiftung Jena
IBAN: DE 26 8305 3030 0000 031666
BIC: HELADEF1JEN
Reference: walk in progress
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