Alison Largent

Alison Needs Your Help

I am Alison Largent; I have Stiff Person Syndrome or SPS and chronic Lyme.

My doctors have described me as severe and advanced and we are going through some of the last treatments available to try to put this awful disease into some kind of remission or at least slow it down.

SPS is a one-in-a -million syndrome that slowly turns you into “The Tin Man”. It makes your muscles activate on their own and either stiffen and cramp up creating severe painful spasms which mimic a grand mal seizure, however these episodes occure while you remain completely conscious feeling everything. It is hard for my parents to watch, and for my doctors.
These episodes commonly last for hours.

I was diagnosed at the age of 46, and have been on this journey for over 7 years, but I don’t define myself as sick. In my head I am still the athlete, I am just trapped in some weird body that no longer does what I tell it and has a mind of its own.

I have an amazing team I trust and would not trade for the world! This has been a long hard road to search out a group of doctors that works together and all agree on the diagnosis that is so rare. These wonderful people are my warriors!

Every day is hard, and you gobble up every functioning minute like a starving person!

To read up on this strange rare disease go to the NORD site at https://rarediseases.org/rare-diseases/stiff-person-syndrome/
or see The Tin Man site at http://www.thetinman.org/spsperm.html
( I have dystonia, myoclonus, along with my SPS which puts me in the rarest category of Stiff Person Plus or PERM & SPS. The differences are described on the Tin Man website and is much easier to read.

I have chosen to fundraise through Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!