Mom with Stiff Person Syndrome needs your help.

This is me. I am Jennifer Trujillo. I am a mom just trying to survive a 1 in a million disease called Stiff Person Syndrome and raise awareness in the process. I never imagined I would be blessed with 6 children just to have this destructive disease hit me during my last pregnancy in 2015. Though I wasn't diagnosed until 2020.

Stiff Person Syndrome is a neurological autoimmune disease. It causes horrific muscle spasms that are strong enough to break bones and tear the muscles. These last for hours and affect me from head to toe as you will see if you watch the mini documentary or my YouTube. Caution ⚠️ they are very hard to watch. I have broken bones and dislocated things, torn things in the videos. My tiktok has a lot more on it. I can't talk, or breathe. It affects every muscle in my body. It is nicknamed Tin Man Syndrome because we eventually get stuck and our muscles become rigid.

I was asked to set up a fund after a documentary about myself was released. I am truly amazed at the compassion of so many people. I never expected people to want to help so much. Though I was hesitant at first, I couldn't say no to these amazing people. I have to put my pride aside.

SPS is progressive and though there is no cure, I was on IVIG therapy for 2 years to try to slow it down but, after 4 severe adverse reactions, due to the stopping of my pre meds, I am no longer a candidate. So now my disease is progressing quickly. I'm allergic to other medications and therapies so there is not much that can be done. I can barely walk, and bed bound at the moment due to a severe fall. They happen a lot with this disease.

This is not the only disease I have but it is the most rare and destructive. I also have dysautonomia, CRPS, COPD ( on oxygen but a non smoker) restrictive lung disease, myopathy, idiopathic skin disorder, gastroparesis ( I was down to 90 lbs & had a jtube feeding tube for 2 months), Mast Cell activation syndrome , pernicious anemia, hypermobile Ehlers Danlos Syndrome, I have a musculoskeletal disease called a calcium channelopathy disorder. This is to name a few that I struggle with every day.

My current specialist is moved. So I will have to fly every 3 months to see my diagnosing doctor 2k miles away. This is what I was doing before I found a local doctor.

These funds will be used to help with my care and try to find pain control as I have no pain management at all. Alternative treatment is expensive. This will also help me with my visits to my doctor as my husband has to miss work and we struggle already.

I want to be a mom again. I want to be out of pain so I can be there for my kids more rather than them having to be there for me.

I want some of who I was back. I want to continue to raise awareness but not in so much pain.

I would be so thankful for any help during this journey.

Most sincerely,

Jennifer & Family