In 1980, I married my husband David. I frequently revisit this opening line in My Story as the years pass and, to this day, I can still say it is a secure and happy marriage. So some things in life are good!
I was diagnosed with IDDM (diabetes). My first autoimmune disease! Three cheers for endless injections and a lifetime of strict dietary control (supposedly).
We applied to adopt. We were feeling very brave, I suppose. Late 30 somethings and mucky nappies (if we get 'em young enough). Should be interesting…
I began experiencing a strange tightness in my upper abdomen. I put it down to the stress of the almost weekly interrogation during the adoption process, not made any easier by David's determination to be (very) Bolshie in the face of what he considered was little short of the Spanish Inquisition. He just couldn’t stand the incredible intrusion although he did understand it was (sort of) necessary, if only because of the rules and regulations surrounding adoption. But even dear old Torquemada can't have been that bad, could he?
Despite Dave (joke!), we successfully adopted two children: Eloise (aged three) and Christopher (17 months). I gave up my job as a practice nurse to be a mother and kept woman by a poorly paid journalist. Our lives are disrupted forever, but utterly complete...except for the nagging, endless abdominal tightness that, at times, led to hyperventilating. I was also becoming increasingly anxious about things that were of no importance (nothing new there, said David).
I visited my doctor and underwent several tests, all of which came back negative. Curious and puzzling. I then began experiencing lower back pain. Another visit to my doctor and a referral to an orthopaedic consultant again revealed nothing. Curious, puzzling and a little disconcerting.
This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
We always welome donations, no matter how large or small. You can donate on-line or via a donations form.
To donate by secure credit card transaction, please use the button below. The full value of your donation (less credit card fees) comes to the charity.
The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.
SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.