Voices Across America

A Childhood of Pain, a Life of Advocacy

Danielle

State: North Carolina
Congressional District: NC02

Diseases

Chronic Pain, Gastrointestinal Disease, Mental Health, Migraine, Neurological Disease, Rare Disease, Reproductive Disease

Issues and Challenges

Danielle has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medical Records Access, Rare / Underserved Disease, Surprise Billing, Disability, Financial Assistance, Gaslighting, Invisible Illness, Premium Payments, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care

My Story

In 1992, I was born with a birth defect called myelomeningocele spina bifida and only had a 5% chance of what doctors considered “a good outcome”. Most people with that type of spina bifida are unable to walk and require a shunt in their brain. Although I am grateful to have defied the odds, the complications from my birth defect left me with many major challenges throughout my life.

In 2002, I started experiencing a tremendous amount of pain in my low back due to my spinal cord sticking to the scar tissue from my myelomeningocele repair. This required tethered cord surgery to release the spinal cord from attaching to the scar tissue, which was a very long and painful recovery process.

To make matters worse, 3 months later, I was diagnosed with scoliosis, a S curvature of the spinal column, which required me to wear a back brace. Unfortunately, after a year and a half, my S curve got so severe I was having trouble breathing and had to undergo a spinal fusion surgery. This surgery required titanium rods and screws to be placed throughout my spine from the T1 to L3 vertebrae to straighten the curvature as much as possible. This was a whirlwind of changes. The challenge of learning how to adjust to a set of hardware that compromised my mobility was very difficult, especially as a child entering puberty.

One day during my freshman year of high school in 2006 after dealing with excruciating pain over every inch of my body, I collapsed to the floor. My parents were unable to help me up. They couldn’t even touch me because of the horrible pain I was in and had to call an ambulance. I was taken to the hospital where, after going through many different tests, I was diagnosed with Fibromyalgia, a chronic invisible illness that causes widespread pain in the muscles and joints of the body. I was passed around from doctor to doctor, trying all the available treatments over the years to reduce my pain. From chiropractors to biofeedback to comprehensive pain management, I tried everything I possibly could. I have found some relief, but it is still a condition that affects my life significantly daily.

In 2017 while visiting a farm I was shocked by an electric fence, which due to my rods went shooting down my spine. I was having severe mid back pain afterwards and tried to find treatment options. I eventually was led to a pain management doctor who gave me many injections. One which ended up causes a severe chronic outcome. Due to my Spina Bifida, certain spine injections have higher risks and I ended up with that outcome. During one of my injections, I experienced severe shooting pain in my back and down my leg. This pain went away that day but eventually came back.

During 2018, I started experiencing debilitating pain in my back. I would walk around in the grocery store, for example, and my back would start hurting then my left leg would go numb, and I would need to immediately find a place to sit to calm the pain down. However, one day that pain never went away. I went for an MRI and was officially diagnosed with Arachnoiditis.

In my case, Arachnoiditis is clumping of the nerve roots causing inflammation of the arachnoid lining, one of the layers that covers and protects the nerves and spinal cord, causing debilitating nerve pain.

For years this pain was so excruciating, and I searched hard for treatments. I needed to wear a back/leg brace if I wanted to stand or walk for longer than a couple minutes. Although it didn’t help with the pain it prevented my leg from giving out on me. Arachnoiditis prevented me from being able to live my life to its full potential. Just getting out of bed each day brought me an immense amount of pain.

The treatment options for Arachnoiditis were and still are already so limited and my complex medical history narrowed the options down further. I tried several treatments to no avail, and it got to the point where my doctors were at a loss for how to help. However, one thing that they all agreed on is that stem cell treatment is a possible solution for my pain.

In 2020 I found a stem cell treatment in Arizona that I was blessed with the help of family and friends to be able to receive. A year after this procedure and pushing myself through the pain, the stem cells started helping and my arachnoiditis pain has reduced significantly.

While this has reduced my arachnoiditis pain and I found some ways to help my fibromyalgia pain, I still feel like I am not a functioning member of society at the age of 30. My quality of life is very compromised, and I need daily assistance, but I am fortunate enough to have an incredible support system.

These challenges in my life led me to become an advocate for multiple nonprofit rare disease associations. I work with the Support Fibromyalgia Network and the Spina Bifida Association to help raise funds and meet political representatives to promote better care in the chronic illness community. I am determined to spread public awareness about these conditions and to improve the quality of patient advocacy.

While this is just a small insight into my story, as I have dealt with several other conditions and comorbidities, I hope it can help others know they are not alone and someone is fighting for them.

My Motivation and Inspiration

The struggles I have faced in my life and the brave fights I have witnessed from so many others in the rare disease community motivated me to get involved in patient advocacy. I have seen firsthand the shortcomings of the way these illnesses are addressed in the medical field today. I know that change will require many of us to speak out and I am happy to contribute my voice to this struggle. I remain determined to bring awareness about rare diseases and chronic invisible illnesses to the public and push for more funding and research to address their effects on this community.

Share This Story

Find More Stories

Browse the map or filter by:

Click on pins to view stories.

ZOOM IN OR OUT TO CHANGE THE VIEW.

Get the most from every Story

Find A Compelling Patient Story

Share it on social media.

Share Your Story On Our Network

Share your insights, challenges and what keeps you going.