These are the questions that we get most often from those who first contact us.
|
|
Q. What is HSP? - A. HSP is a group of rare neurological conditions. |
These conditions can be known as:
- Hereditary Spastic Paraplegia, Hereditary Spastic Paraparesis (HSP),
- Familial Spastic Paraplegia, Familial Spastic Paraparesis (FSP),
- Idiopathic Spastic Paraparesis or
- Strumpell-Lorraine Syndrome.
Genetic abnormalities reduce the levels of signals along the spinal cord. This causes slowly progressive stiffness (spasticity) and weakness of the lower limbs. The first symptoms for most people are stiffness and weakness of the legs possibly followed years later by a scissoring spastic gait. As a result of this spasticity, HSP affected people expend a much greater level of effort than an able bodied person in walking. Bladder problems and fatigue are often associated with the condition.
The severity of the effects of HSP varies from patient to patient. Where one patient may experience early onset HSP, but manage to walk unaided for the rest of their life, another patient may require the use of a wheelchair within a few years of onset.
Whilst there is no cure for HSP, there are a range of treatments which many patients find beneficial. Further reading via our Links page... |
|
|
Q. What is the difference between HSP and FSP? - A. There is no difference between HSP and FSP. |
|
HSP is arguably the more accurate of the two terms. |
|
|
Q. What treatments are there? - A. There are three main types: |
1. Physiotherapy / Exercise. Many people find a regular regime of exercises beneficial in keeping muscles stretched and thus reducing stiffness and pain. It is important to get help from neuro-physiotherapists to ensure the neurological aspects of the condition are considered in developing appropriate exercises.
2. Electrical Muscle Stimulation. Over recent years, a technology named Functional Electrical Stimulation has been used successfully by an increasing number of HSP patients. The device delivers electrical impulses directly to certain muscle groups, allowing patients to use muscles which had previously fallen out of use due to HSP. Perhaps the most common effect is to allow a trailing (dropped) foot to be actuated effectively during walking, thus improving gait and reducing fatigue.
3. Prescription medication. A range of drugs can be used to lessen the stiffness and/or reduce pain. Some medicines are also used to deliberately weaken opposing muscle groups and thus allow some degree of mobility to be recovered. |
|
|
Q. What does the Group do? - A. Helps members and assists research |
The Group aims to encourage and support members and to assist research. We have recently provided grants to teams researching aspects of the condition and we regularly publish information about HSP and the Group to our members.
The Group provides various ways for members to keep up-to-date and communicate with each other:
- An Annual General Meeting featuring lectures by FSP/HSP specialists.
- Regional meetings are held twice a year in some of our regions.
- A newsletter published to our members quarterly
- A telephone and e-mail help-line offering advice and support to members.
- A library of information articles on HSP.
- An Information Booklet is published to members containing a synopsis of helpful items.
- Grants are provided to members to help with the purchase of mobility aids
- Research Grants are provided in support of projects researching aspects of the condition
- An e-mail discussion group system allows members to share information and experiences
|
|
|
Q. What Grants are available to members? - A. Grants of up to £400 are available |
|
We are keen to continue to support our members by providing grants to assist them in increasing their mobility by financing scooters or wheelchairs. Members who can’t get funding for the FES scheme should also contact us as we are keen to help with this. Grants of up to £400 per individual are available. Application Forms are available here or from any committee member and completed forms should be sent to the Secretary, HSP Group, 18, Lodmoor Avenue, Weymouth DT3 5AF. |
|
|
Q. How does the Group support Research? - A. Grants are available for HSP Research Projects |
|
As a group we know there are normally research projects in progress into aspects of the condition. At present there is a mismatch between the funds we have available and the cost of such projects – we can't fund a whole project. As committee we want to use our resources to help wherever we can. We believe it is appropriate to use our funds to support research projects, so we are prepared to use the funds to provide the “day-to-day” costs which often allow such projects to run more smoothly. Examples of such costs might be: resupply of laboratory reagents, extra laptop, other consumables. We would like researchers to apply to us for grants of £5000 for funding to support such projects. Written applications should be sent to the Secretary, HSP Group, 18, Lodmoor Avenue, Weymouth DT3 5AF, or by email to
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
|
|
|
<< Start < Prev 1 2 Next > End >>
|
| Results 1 - 6 of 8 |
