What you wished you knew
Many people with HSP report that amongst all the natural stress, fear, anxiety and uncertainty that goes hand-in-hand with a diagnosis of HSP, having reliable and readily accessible information to answer the thousand questions you have would have been really helpful.
We plan to develop a section of the website to provide such information for people newly diagnosed with HSP and we need your help to do that, especially if you did not have such support when newly diagnosed yourself.
Please email us your thoughts or add them in the Comments box at the bottom of the page. Here are three questions as a prompt:
- What questions did you have when you were newly diagnosed?
- What information would you have liked to have access to?
- What else would have been really helpful?
Thank you for your support in providing this information that will help others in the future.
The questions I needed answered initially:
Will it kill me? Is there a cure? How far away are we from a cure? Will my children have it? Will it affect my travel plans?
Will I have to give up work? Where can I find support? When should I tell my work? Should I take my walking stick to a job interview? Do I need to declare it or mention it at all? It would have been extremely useful for my diagnosing doctor to suggest where I could find support – other practitioners, physios who specialised in neurological disorders, leads to online support group……just to point me in the right direction.
My children have HSP.
1 Firstly I thought it is the end of our life
2. How to get treatment?
3 How to arrange such a huge amount for research?
4 How the Disease will further affect my children?
What questions do you have when you were were newly diagnosed?
What does it mean? It seems the younger you are diagnosed the more effect it can have on your life. It can effect your walking. It doesn’t effect your longevity(?) of life.
What can you and your partner expect? You can physically do less which means the responsibility passes to the partner.
What information would you have liked to have access to?
Earlier diagnosis. Might seem obvious but you worry about ‘the unknown’. You know something is not quite right but you don’t know what it is.
What is available? There is help out there but you need help finding it. NDIS, Aged Care etc
What else would have been really helpful?
More local doctor knowledge – what I mean is it amazes me how little most local doctors know about HSP.
Contact with other patients with the same strain – might be just me but I find it easier to relate to other patients with HSP7 rather than another strain of HSP.
Questions:
Is there a support group and where?
Where can I find other people whose childen have SPG 11?
Prognosis for SPG 11.
Where can I find a specialist in SPG 11?
What sort of medical support will my son need?
Is there any other support which would help him and us?
Support and understanding from family would have been very helpful.
Can anyone give me info about HSP/SPG 9A?
Editor’s Note: Here are some links: https://neuromuscular.wustl.edu/spinal/fsp.html#domcat https://www.omim.org/entry/601162?search=SPG9A&highlight=spg9a https://pubmed.ncbi.nlm.nih.gov/30853934/