Demand steadily grown over time
The Foundation has a dual mission. One part is related to HSP research. The other part is about acting as a community hub, creating awareness and providing information, education and support.
The Foundation plays a valued role in the sharing of information with people with HSP from all over the world, and also with clinicians spread far-and-wide to enhance their care of people with HSP.
People find reliable information on all manner of things related to HSP on the Foundation website and occasionally they follow up with inquiries.
The Foundation responds in a number of ways depending on the particular situation, sometimes providing sourced information directly; sometimes through external links to other websites or resources; and sometimes by referring inquiries and questions to a global network of HSP experts on different topics who mostly then respond directly.
Queries from doctors are across-the-board, asking about patient presentation and symptoms; diagnosis; measurement of disease severity; genetics; family planning; and management and treatment of symptoms.
Most inquiries, as would be expected, come from people with HSP and those who care for them. If you can imagine the topic, then it has been asked about over the years. People with HSP often contact the Foundation soon after they have been diagnosed, mostly with questions about HSP that their specialist or doctor did not have time to cover, did not have answers for, or more commonly where they can’t make sense of their doctor’s response.
Especially after an appointment with a neurologist, people ask “what did the neurologist mean when they said … ?”. In these circumstances the Foundation plays a translational role, unpacking, breaking down and taking the time to provide contextualised information on multiple aspects of HSP. When this is not possible, we help people with HSP clarify their thoughts and concerns, working with them to develop good questions for a subsequent medical appointment.
People with HSP regularly express their appreciation for the understanding imparted and the comfort and confidence created where previously there was ambiguity and confusion, and the stress resulting from those feelings.
So we help people with HSP to better understand their condition and some of the information they have been given or have discovered for themselves. Sometimes this includes guidance on how to effectively make inquiries.
We also help people get connected with the right resources and support – medical and allied health professionals, and sometimes disability support and advocacy services, for example to help with NDIS applications.
We provide help by email, phone call, videocall, whatever will work best for the particular situation. We ask that people initially make inquiries to us by email as we don’t have the money or resources to handle phone inquiries.
We can be reached at <[email protected]>. Everyone always gets a response from a real person.
I would like a lot of information as all I take is Baclofen, which really does nothing for me, I have been to hospitals & they have never heard of it so what help can they give.
I was first diagnosed with HSP 15 years ago and steadily getting worse especially with walking alone and with stairs. I was wondering if there is any help out there?