In April of 2022. shortly after her 6th birthday, Jo's foot and ankle suddenly became severely swollen. She did not have pain and she made sure to prove to me that she didn't. Later that night the swelling progressed up her leg. This is where her journey began. After seeing four different doctors in two weeks, we were sent to Children's Hospital in Little Rock, AR. Two days of countless tests and blood work, we were without answers and sent home to "wait and see." We felt defeated, but we knew that we had to advocate for our daughter to find the cause of the swelling.
Over the next month and a half of weekly visits with her regular doctor, Jo's swelling continued to worsen. He finally realized that we were not settling with the notion of "she may grow out of it." He sent us to a Pediatric Cardiologist in Shreveport, LA who ran more tests; he had a strong suspicion that she had Lymphedema. He advised us of how rare this could be and that finding a doctor would take time, as there are very few in the US that specialize in it. A few weeks later, we received the call that we would be going to Dallas, TX for specialized testing that would eventually confirm his suspicions.
In July of 2022, we found ourselves at Dallas Children's Hospital. After what felt like the 100th test, Jo was diagnosed with Primary Lymphedema. The word "Lymphedema" blew my mind because I thought it was only found in adults who went through cancer treatments. We found out not many people had heard of this disease in adults, much less in children. It became very apparent that there is a huge lack of awareness and education of this disease.
Lymphedema is the chronic swelling in parts of the body where the lymphatic system isn't working properly. There are two types of Lymphedema: Primary and Secondary. Primary Lymphedema affects 1 in 100,000 children and is the abnormal development of the lymphatic system. Secondary Lymphedema is more common and occurs when there is damage/trauma to the lymphatic system, such as cancer treatment or sports injury. The lymphatic system is crucial to keeping our body healthy and fighting infections. There is currently no cure for Lymphedema, it can be managed through compression garments and wraps, MLD (Manual Lymphatic Drainage), and compression pumps. People who do not receive treatment are more prone to secondary/life threatening infections, psychological issues, orthopedic problems, and eventual disability.
Lymphedema affects on a child/adult is emotionally, physically, and financially burdening. Most insurance companies cover very little of the costs, with some cover nothing at all. Children's garments need to be custom-made, usually done so overseas, which drives the cost for one item to exceed $1,000.00.
Our CLT (certified lymphatic therapist) has become a very important person in our life. If you are new to your journey, you will soon find that your CLT will become like family. It is very important to make sure your therapist is truly dedicated to your child. Because those home text and emails will be constant and valuable. A CLT not only performs the specific massage technique they also teach you as the caregiver ways to massage at home. Keep in mind, your at home MLD is not as in depth as what your CLT does in clinic, so never drop your CLT unless you have another one lined out.
Between the lack of certified therapists in our area (leading us to travel four hours or more away for a week of therapy every 2-5 weeks) and fighting with our insurance company to pay the outrageous treatment costs, we are determined to help her fight this disease to ensure her quality of life doesn't get worse.
As if dealing with all of the above issues were not enough, Lymphie patients aIso have a love hate relationship with shoes. The shoes for a Lymphie foot have to have a wide mouth, so the top of the foot can slide in without being too tight. This requires parents to have to purchase two sets of shoes, one regular size for the unaffected foot and one wide size for the Lymphie foot. There are only a few brands with this feature including Hey Dudes, Crocs, buckled sandals (by making new holes on the buckle) and Billy shoes. Buying two sets of these shoes can cost over $100 to make one complete pair for a single child. The other mismatched pair sit in the box wasted and unused.
It is because of my personal experience with being a caregiver of a child with Lymphedema and talking with other families with the same struggles, I started Jo Rising Foundation. Jo Rising Foundation is a non-profit 501(c)3 organization that serves as a resource for children to receive proper shoes for their Lymphie feet. We also have goal of helping parents cover the cost for compression treatments. We strive to raise awareness in our community and state so that doctors pay attention and physical therapists become certified to treat children and adults who suffer with this disease.
Together we can touch the lives of Lymphedema patients, raise awareness in our communities, and aid in finding a cure.