Janitza's CRPS battle

lease join me in my fight to beat CRPS

My life before CRPS:

Living with CRPS:

Please join me in my fight to beat CRPS

My name is Janitza Perez. In October 2016, I was diagnosed with Complex Regional Pain Syndrome (CRPS) Type II, also known as Causalgia, on my left foot. After 3 months with a pain that I was not able to bear weight on the foot, a Neuro-Pain Specialist determined that the CRPS was triggered by the immobilization of my left foot with an ankle brace. Ever since my diagnosis, I've been getting worse. I have limited mobility and require walking aids like crutches, walker, seated scooter, or a wheelchair.

During 2016 and 2017 my life just turned out to be one full of doctor visits, hospital trips, medical insurance claims, financial struggles, and time off from work. The symptoms on my left foot started in 2016 were skin color changes, whole foot swelling, and sharp and unbearable pain. The ¹Allodynia and ²Hyperalgesia made any physical contact impossible, and the burning feeling sensation felt like direct fire over my skin.

In a couple of months, the CRPS spread to my whole left side, including my arm, face, neck, and head. I had a flare up from 2017 to 2018, where I was not able to bear weight on my heels and feet. In that time, the only way that I could be transferred or relocated from the bed or out of the home, was seated on my scooter or in a wheelchair.

On the midst of undergoing this severe painful disease, Hurricane Harvey flooded our home in September 2017 negatively impacting further my already poor quality of life. It took almost two years to rebuild our house. In January 2018, I had to resign from my job because of the exacerbation of the CRPS symptoms. I spent the rest of the year bedridden, and house bound 24/7. I was under a lot of medications and procedures and only felt worse as time went by and ended up with collateral damage to my body due to the unsuccessful treatments and medications.

Since 2019, two abdominal surgeries and one pregnancy exacerbated the condition causing the CRPS to spread and get very complex. The ³Dysautonomia became aggressive throughout the whole body which includes my four limbs, head, and torso. The ⁴Dystonia also became very aggressive throughout my body muscles and internal systems. I have dysfunction in my GI and bladder systems, joint stiffness and bone pain, muscles spasms, and pain in my four limbs. I have pain in my head and face, neck and spinal cord, upper and lower back, and inflamed internal organs during the night. Now my CRPS is systemic. Since January 2022 I lost more than 30 pounds because I cannot eat or drink without having excruciating pain. I have daily and nightly flare ups with different symptoms where the pain is unbearable 24/7. Every night, I have pain-somnia; therefore, I am suffering from an intense brain fog and excessive weakness due to the debilitating pain.

The condition is out of control and is taking over my body and mind. I’m afraid to end up completely and permanently bed bound and unable to take care of my daughter. This disease has overtaken my life; my quality of life has diminished to zero and I have been restricted to a point where I often have zero sense about the external world. This illness has had a tremendous impact on our family, mostly on my daughter Jasmine and husband Ramon. I missed her first Christmas and her first birthday and cannot carry her or place her in my lap because it is a trigger for a CRPS flare up. It has been a rough 6 years tainted with hopelessness and suffering.

When I thought there was no hope for remission or a cure, I found a place that offers a Neurologic Rehabilitation Program. The Spero Clinic in Arkansas is the only place in the world that offers a program for CRPS remission. It is a 14-week treatment program, and they use an approach that consists of restoring balance to the Central Nervous System.

My life had stop for six years, but now there is hope for me to achieve remission and take my life back. I want to be happy and feel alive again, be healthy and active again, retake my professional career to alleviate the financial burden that we have been in for 6 years and, be the mother that my baby needs and deserves. She is my reason to live and fight for a remission.

I need to do fundraising because it is a private clinic that doesn’t accept medical insurance. Our goal is to raise $60k to complete the 14 weeks program at the Spero Clinic because the treatment is paid out-of-pocket. We need your help to get there. We are partnering with the Burning Limb Foundation (a 501c3 nonprofit) as our fundraising platform. 100% of the proceeds of your donation will be used to pay for the treatment costs, traveling expenses, and living expenses while I am at Fayetteville, Arkansas. I encourage you to donate and help me BE the miracle. It is urgent to raise the money as soon as we can because my treatment is approved to begin on December 21, 2022.

Note: All donations are tax deductible.

Thanks,

Janitza

Glossary:

¹Allodynia is pain due to a stimulus that does not normally cause pain.

²Hyperalgesia is increased pain from a stimulus that normally provokes less pain.

³Dysautonomia is a disorder of autonomic nervous; is a dysfunction of the nerves that regulate nonvoluntary body functions, such as heart rate, blood pressure, and sweating.

⁴Dystonia is related to spasms or uncontrollable muscle contractions.