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What is HSP

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Research

Disclaimer:

This excellent video focuses on someone who has been diagnosed with SPG4 so it won't be applicable to everyone, considering that, so far, over 90 genes have been identified with HSP. He also mistakenly says that HSP is a rare disease that affects the lower motor neurons. However, it affects the upper motor neurons.

Time Stamps:

  • 0:00- 1:00: Intro
  • 1:00 – 2:30: Part 1, What is HSP
  • 2:31 – 4:49: Part 11- The Genetics of HSP
  • 4:50-9:47: Part 111- Jason & HSP

Here is a link to clinical trials that have been completed or are recruiting: CLICK HERE

Articles on HSP

Understanding HSP disease in brief - here

Promising treatment found for SPG5 HSP - here

SPG7 more common in Australia - here

Next generation gene testing telling a story - here

Hereditary spastic paraplegia from 1880 to 2017: an historical review - here

Chronic Pain - here

Final QA with Craig Blackstone NIH on drug trials here

Management of HSP - here

Recherce HSP publications articles - here

Clinical trials designs - here

Next generation molekylar diagnoses Italy - here

Perspective on geomics on HSP - here

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Physical Therapy

Physical therapy for people diagnosed with HSP

Introduction

HSP'ers constantly have to deal with maintaining the capacities of what their body can do. Excessive physical activity can lead to fatigue, an enhanced spasticity and to general aching all over. Conversely, a lack of activity leads to muscles and tendons retraction, loss of muscular mass and, finally, to inability to work the muscles. In brief, HSP'ers have to exercise not too much, not too little:  a real tricky job!

Thus to get fit and in better shape, besides the regular physiotherapy that we must continue, each individual must choose physical activity in accordance with their current abilities. That requires a clear understanding of willpower and limits.

EURO-HSP, the European HSP Federation of National Associations, herein proposes to share experience of what has worked at various local levels. From these proposals, each HSP'er can choose what fits best.

A summary of all these experiences is being compiled by EURO-HSP right now. It will be available here in a few months.

 

France

French suggestions

 

Denmark

Danish suggestions

 

The Netherlands

Dutch suggestions - in Dutch

Orlando Physical Therapy:

This vlogger is a Neurological Physical Therapist. She focuses on people who've had a stroke but many ideas apply to us. Here is the link to her channel. Please be aware that this is not an endorsement. You might find some of the information helpful. Peruse at your own discretion.

Bob and Brad

Bob and Brad are 2 of the most famous (in their own opinion!) physical therapists on youtube. Again, this is not an endorsement. You might find some of the information helpful

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Get Involved

There is an HSP forum, RareConnect, maintained by EURORDIS. You can request for the translation of the messages to your language.

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The US HSP Foundation: https://sp-foundation.org
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Adam Lawrence's Blog called : A Journey to HSP/FSP:https://hspjourney.blogspot.com

European Reference Network for Rare NeurologicalDiseases (ERN-RND) http://www.ern-rnd.eu/

Eurordis: The voice of Rare Disease Patients in Europe https://www.eurordis.org/de

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AdolfStruempelPrize2021

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ERN-RND

Network for Rare Neurological Diseases in Europe

Very important link http://www.ern-rnd.eu