I am pleased to announce that my 2021 survey is now open. This year questions are available in English, Italian, Dutch, French, Spanish, Portuguese and German. These languages are the same as last year, with the addition of German. Click on the relevant link in the table to below to access the questions in that language.
The focus for this years survey is:- Relationships
- Information
- Acceptance
- Life with HSP, including some bladder questions.
|
Language |
Link to access survey: |
Responses 30 Dec |
|
English |
253 |
|
|
Dutch |
57 |
|
|
French |
52 |
|
|
German |
119 |
|
|
Italian |
18 |
|
|
Portuguese |
77 |
|
|
Spanish |
19 |
15th December - Now over 500 responses!
Data update - Selected results from a combination of the English and German results on 8th December.
83% of people with HSP consider themselves to be disabled,
which is a similar result to previous years.
Two thirds of people are completely comfortable discussing their
HSP with their partner or family. Some 6% are not comfortable discussing this,
with the remainder being comfortable some of the time.
Almost two thirds of people are in a long term relationship.
Of these, three fifths say that their HSP does not affect their relationship. Three
in 10 consider that their HSP affects their relationship negatively and one in
10 consider that their HSP has a positive effect on their relationship.
About 85% of people identify that they have bladder issues.
Of these, just over a quarter of people take no action to control this, and
almost a third take medication. Roughly one seventh indicate they drink less
than they used to and a similar number say that they train their bladder muscles.
The majority of the remainder use a catheter, with a small number of people
getting Botox injections. Many people indicated that they also use pads,
incontinence pants or nappies.
I've had HSP since the age of 2 or just around there. There were 5 family members that had HSP, 2 have passed on, but 4 of us still remain. We all have different degrees of HSP. Let me tell you, we've all different lives as well. I personally, have probably been the luckiest one, then our son. Bladder is an issue, walking has become more unstable as I've become older (67 now). Always had my own way of walking, but road a bike, roller skated, took long walks, etc. My Mom, sister and niece, were not so lucky. I don't believe my Grandfather did any of those things either. I had lots of friends and still do, and was not judged by the way I walked, others not so lucky. I think it was because I tried to accomplish things, and they didn't have the strength to try as hard. I also have a wonderful husband that is always by my side. I'm much slower now, use a cane and can't ride a bide, roller skate or take long walks, unless I'm in a wheel chair and my husband pushes me. I know I don't exercise enough, kind of lazy. I worked my whole adult life and did well for my family. I know this is no fun, but I always say "It could have been worse." Best of luck to all that share HSP.
ReplyDeleteThanks for sharing your story!
DeleteHi Adam,
ReplyDeleteI live in Montreal, Canada. After three years of tests and consultations, I was finally diagnosed with HSP by a neurologist at the McGill Neurological Institute. I have no known family members (past and/or present) with the same disease. From knees down to my feet my legs are stiff, and my balance is almost zero. Other than these symptoms, I have absolutely no other side effects, no bladder problems, no swallowing or facial muscles problems. I teach ESL online, I have to use my lips and face so that my students can understand me and follow my instructions. I used to teach in person, but as of March 2020, due to Covid19, all my classes were suspended, then they have restarted online. I still drive everywhere but walking has become slow, I have to rely on a cane and/or walker. I had two dogs, corgis, they were my balancing act on our walks. One of them, Esther, died in February, she was 12 and had cancer and kidney failure. Due to my loss of income during the spring of 2020, I had to give them up for adoption - I was not able to afford my daily dog walkers who took them for long runs or to the dog park. Within three months my online classes have assumed so my financial status has stabilized. I reached out to the adoption coordinator to please have Ellen ( by then Esther passed) returned to me. Dr Massie, my neurologist has written several letters to the adoptive couple, emphasizing how important part she would be playing in my HSP affected life as my service dog. But we never had any response. I am beyond desperate, I miss Ellen, had it been not for my own daughter Fanny (who is married and living with her husband in another part of Montreal) I would have driven off a cliff or a bridge..
Please, Adam, or anyone within the HSP community, help getting Ellen back. I will be glad to forward all the documentation RE my problems.
In exchange, I will volunteer my time and talent to the HSP organization.
Thank you for your amazing work, as of now, I am a faithful follower.
Yours truly
kk
Hi - Thanks for sharing your story, I dont know that I'm able to help with Ellen, but hope that you find a good solution.
DeleteI did write the comment with my name, for some reasons it's not there
ReplyDeletemy email contact is katikemeny0@gmail.com