If I Can Help in Any Way, I Will

My name is Angellisa, and I am 26 years old. I live just outside of Dallas, TX, and I am a Blount’s disease warrior.

It all started when I was a baby – I started walking early, around 11 months old, and by the time I was three years old, my mom noticed that there was something wrong with my legs. The doctors diagnosed me with rare infantile Blount’s disease in my right knee, and it eventually impacted both legs. Growing up with Blount’s disease meant I had to face numerous challenges – dealing with the pain and disability of the disease itself as well as the way people stared at me and how they treated me because of how I looked and walked.

I couldn’t keep up with other kids running, jumping, playing. I had to wear braces, use crutches or a wheelchair, and even got rides between classes because it was too painful to walk. I depended on family, nurses, loved ones and friends to help me with everything. I couldn’t bathe or dress myself or do any of the things I wanted to do on my own.

When I was 11 years old, I underwent a corrective surgery to try to address the issues with my legs, but despite a year of painful physical therapy afterwards, my legs were still bowed, and the surgery hadn’t helped. The doctor wanted to do more surgeries, but my mom didn’t want to put me through the painful process all over again when there was a good chance it wouldn’t help any more the second time and the doctor couldn’t guarantee my mom that I would walk straight again. Unfortunately, my Blount’s disease has caused many complications, including lack of cartilage in my knee (it’s bone on bone), hip issues (dysplasia and uneven hip growth), nerve pain, rheumatoid arthritis, and nerve damage that’s so bad it shuts my body down due to the pain and inflammation. But I try not to let it get me down, even when I’m struggling with pain.

When I was able to – I loved to dance. I was a dance instructor and had my own dance team, and I loved expressing myself that way. My body won’t allow me to dance anymore, and I had to give up my team, and I miss it so much. But I still love the music. Music helps me get through the days – good and bad. And no matter what kind of day it is, I try to make the best of it. I try to live every day to its fullest and make the best of every situation, whether I wake up in pain, or not.

My mom has always been my biggest advocate and strongest supporter, and she is constantly there for me. She is one of my main inspirations. She’s never left my side; she is always so strong. I’ve watched her raise us – our house always had so many kids in it – and I admire her for helping however she could. It’s one of the reasons why I love to help other children – through babysitting, mentoring, and advocacy.

My passion for being an advocate is what motivates me through the difficult days. Every time I encounter a family impacted by Blount’s disease, I am inspired to speak up and share my story. We are all warriors – many of the people I’ve met have gone through multiple surgeries, sometimes dozens of surgeries, to try to fix their legs. Some children have experienced depression, or other mental health challenges, simply because of their experiences due to Blount’s disease – the pain, the surgeries, the physical therapy, the bullying, the daily struggles. I know I am in the right place, at the right time, to try to help connect with others impacted by this condition and help them through their challenges.

Connection can be so powerful when you’re struggling with a rare disease like Blount’s. When I was first starting my journey toward becoming an advocate, I connected with Miss Angie and Anneliese, from the Blount’s Disease Strong Foundation. Miss Angie was extremely helpful to me as I was creating my own foundation here in Texas. Along the way, I have met so many friends and so many people – my best friends have Blount’s, and they are some of the strongest people I know. Each story touches my heart and motivates me to try to do as much as possible to help. Every year on June 15^th, we work together to share stories of people living with Blount’s disease and we wear #BlueforRareBlountsDisease to help raise awareness.

These days, I work toward raising awareness of Blount’s disease through my organization while I work to secure its non-profit status. I share my story on social media through Facebook and Instagram, and by speaking at local groups, medical schools, hospitals and clinics. Because Blount’s disease is so rare, many doctors and nurses haven’t heard of it, which makes it difficult for people with Blount’s to receive proper care. And to make it even more challenging, many Blount’s specialists are pediatric doctors, and they don’t see patients over the age of 18. This means young adults, like myself, often have to travel long distances and see multiple physicians to try to find an orthopedic specialist who has heard of Blount’s disease and is willing to help care for you as a young adult.

I have big dreams for my non-profit organization to try to help address those issues. My goal is to raise awareness among healthcare providers, support transportation needs to reach Blount’s specialists, help fund leg braces or other early interventions, as well as provide support for parents of children dealing with a Blount’s diagnosis and seeking a way to reduce their child’s pain in order to give their child a little relief.

It doesn’t matter what kind of pain I’m in, if I can help in any way, I will do it. I have been living with the pain and complications of Blount’s disease for 26 years, and I have learned how to push through it and compartmentalize when it comes to helping someone else. It’s my passion, and I know it matters. I fight for myself, but more importantly, I fight for anyone else who is also impacted.

Blount’s disease (also known as tibia vara) is a rare growth disorder that affects children, which causes the growth plate near the inside of the knee to slow down or stop making new bone, resulting in bowed legs just below the knees. There are two types of Blount’s disease – infantile and adolescent. Blount’s disease may occur in one or both legs and may lead to shortening of the affected leg and other changes within the leg bones. While the cause of Blount’s disease is not well understood, it is associated with early walking and obesity, however a variety of hereditary and genetic factors are likely involved and is more prevalent in those with African, African American and Afro-Caribbean descent.