Stiffed By Stiff Person Syndrome

Juleah Morgan Brewer is organizing this fundraiser.

Donation protected

Hi everybody! My name is Juleah; I’m a mom, wife, and, until recently, an active participant in all the things, most of the places, in coordinated time-frames.

In 2015 I was officially diagnosed with Stiff Person Syndrome. Most people have never heard of it, as it EXTREMELY rare (<1 in a million cases), but recently you might have heard Celine Dion announce that she has it as well. People who have Stiff Person Syndrome experience alternating muscle rigidity and spasms. Muscles can be so rigid that they feel like a board. And the muscle spasms, which are extremely painful and can be triggered by stress or other external factors, can create enough force to break bones, tear muscles, and snap tendons and ligaments. I’ve personally had jaw spasms that have shattered teeth down to the roots, hip dysplasia, and so many falls.

Stiff person syndrome (SPS) is a neurological disease with autoimmune features. Symptoms include muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety. Muscle spasms can be so violent they can dislocate joints and even break bones. Muscle stiffness and spasms can also affect other body parts, such as your face. This can include muscles used for eating and talking. Muscles involved in breathing may also be affected, causing life threatening breathing problems. What causes stiff person syndrome? The reason some people develop SPS is unknown. There are some risk factors, but not everyone who develops SPS has the associated risk factors.

SPS is labeled as a Terminal Disease. It takes on average seven years to identify. It is often mistaken as Multiple Sclerosis, Parkinson’s, Fibromyalgia, Psychosomatic Illness, Anxiety, Phobia, and other autoimmune diseaseshave had more episodes than I can count, and multiple types of treatments as well. This is where I am now, and why I need your help.

On August 8, 2023, I had surgery to implant an intrathecal Baclofen pump into my spinal fluid to help with the spasticity in my trunk and legs. This changes EVERYTHING as the spasticity in my legs is the only thing that is keeping me on my feet and walking due to small fiber neuropathy that’s also in my legs and feet. So now my physical world is changing, getting smaller, and my ability to walk on my own is going to be really, really difficult. Initial recovery from the surgery alone is 6-8 weeks, and that’s incisional and for the spinal catheter!

To have mobility now after surgery, I will need items that, unfortunately, my insurance won’t cover the specific types that I need: a ramp to get in my front door since there is 1’ drop from door to sidewalk, a foldable scooter that is light enough to handle and that’ll fit in our car. My medical bills are already trickling in from my recent 12 day hospital stay for plasmapherisis treatment, and are over $2k already (I do have to thank Insurance here as this last run of treatments was over $1.2m/day!) So I’m watching dollar signs add up and up and up while my bank account cringes and cries a little.

So, for transparency, I am trying to raise money to help pay for these mobility items, with medical bills, transportation to appointments and therapies, and additional medical/therapy items needed.

I know that money is tight all around, and anything is so appreciated! If you can’t donate, please PLEASE share; the wider this reaches, the better. Thank you, thank you so much; I really cannot thank everyone enough, but I’m throwing all the thankfulness I have out there to everyone!