Pediatric Lymphedema – The Story Behind Brylan’s Feat Foundation « Lymphedema Blog
Tweet I heard Brittany Williams speak at the 2019 National Lymphedema Network conference in Boston. Brittany's daughter, Brylan, was born with primary lymphedema, and Brittany's speech covered the story of her family's journey to seek an appropriate diagnosis and obtain appropriate treatment for her daughter Brylan. During Brittany's trip, she became aware of many heartbreaking […]

I heard Brittany Williams speak at the 2019 National Lymphedema Network conference in Boston. Brittany's daughter, Brylan, was born with primary lymphedema, and Brittany's speech covered the story of her family's journey to seek an appropriate diagnosis and obtain appropriate treatment for her daughter Brylan.

During Brittany's trip, she became aware of many heartbreaking stories from other parents who had children with lymphedema; she then decided that she wanted to help and help provide the necessary treatment for pediatric lymphedema patients who are in financial need, and help raise awareness of the disease. In May 2018, Brittany launched the Brylan's Feat Foundation, a non-profit organization dedicated to serving as a resource and advocate for children and their families who have been affected by lymphedema.

I was so impressed with Brittany's determination to make a positive impact on the pediatric lymphedema community that I asked her to write her story, which I'm proud to share with you -

It's here:

My name is Brittany Williams and I am a wife, mother of four, and lymphedema advocate. My relationship with lymphedema began without my knowledge when I was pregnant with my only daughter, Brylan. During her month-long exam, there were concerns for swelling on the upper part of her foot. Her pediatrician was unsure why this was happening and offered me two options. He said, "We can wait and see what happens or we can act." Needless to say, we had genetic testing within days, because when it comes to one of my kids, I try to be proactive, especially when it comes to their health.

Brylan's legs when she was first diagnosed (13 months)

Over a period of 10 months, Brylan underwent multiple tests and countless exams by over 8 different doctors while continuing my own research. I was amazed at how difficult it was to come up with answers and started to feel defeated, helpless and like I was failing as a mother and protector. But when Brylan was 11 months old, we traveled across the country to Children's Hospital in Boston, eventually being diagnosed with Primary Infant Lymphedema. After hearing his diagnosis, the only thing I could think of was how to fix it? I'm his mom and it's my job to make things better.

My husband and I took a few days to process his diagnosis. And sure enough, we did what most people do with new medical information, we turned to Google, reliable and still factual. We both knew how bad it was, but we couldn't help it. After looking at all of the devastating photos, we quickly realized that we had to move on and find the best way to help our daughter.

Because Brylan was so young at the time, we were advised to buy her tight socks and wait until she was a little older to begin a treatment plan. As I mentioned, I like to be proactive, so using his young age as a crutch was not a plan I was okay with.

I immersed myself completely in the lymphedema community and desperately searched for patients and other relatives to talk to. I started calling therapists to try and get Brylan fitted with compression garments. It turned out to be an uphill battle as no therapist wanted to tackle the case of such a young patient. I kept hearing, "sorry, we don't have to do with children." To add to my frustration, it seemed to me that our insurance company had tried everything to delay the process even further. Finally, after six weeks of continuous phone calls and emails, I found a therapist and our insurance approved the clothes, although with little help from insurance, Brylan's first set of clothes cost just over $ 400. A few months had passed and Brylan's swelling did not seem to be improving. She wore her clothes everyday, but I wasn't seeing the results that I wanted.

Once again, I listened to my instincts as a mom and took her to her therapist to show me how to properly wrap Brylan. Her new routine consisted of personalized daily clothes and short stretchy bandages at night. This routine also included a 20 month old kicking and screaming as I wiped my own tears to see what I was doing. It was honestly one of the hardest things I've done as a parent, but after a few weeks we started to notice a significant difference. Her right leg, which was diagnosed as moderate, started to be the same size as her left leg, which was diagnosed as mild.

Brylan and Brittany

Since then we have done our best to stick to Brylan's treatment plan. Incorporating Brylan's treatment plan earlier in her life made things a lot easier as she got older. Brylan, who is now 6, considers his compression treatment to be part of his normal routine. Sure, she has her rebellious moments and there are rough days when my husband and I want to take a break, but what kind of example would I be setting if I didn't help her stay submissive? At times like these, I try to remind myself that as a parent, I'm her strongest support system and the one she turns to for advice. Yes, it's more work for the parent or guardian, but who ever said being a parent was easy? The benefits of seeing my child as healthy as possible and being able to run with their brothers, play sports and just be a kid are worth every hard day.

Since becoming a member of the lymphedema community, I have continued to hear heartbreaking stories from parents about financial difficulties in providing treatment for their children. Learning about the struggles of other children with the same illness as my daughter made me realize that I wanted to help. I wanted to give these children the same chance as Brylan, the opportunity to fight their disease. My intention was to create a positive impact on the pediatric lymphedema community because I was frustrated with the outrageous treatment costs, insurance battles, lack of lymphedema education among healthcare professionals, and lack of general awareness.

With the launch of the Brylan's Feat Foundation in May 2018, there is finally a resource for families affected by pediatric lymphedema to turn to. We are the first and only organization dedicated to supporting children battling lymphedema. Our mission is to help provide the necessary treatment of lymphedema to children who are in financial need, to help raise awareness and to provide education about this disease.

The Brylan's Feat Foundation expanded our efforts to support children battling lymphedema by hosting the first and only summer camp in the United States, Camp Watchme. We will be hosting Camp Watchme for the second year in July 2020.

As a community, I hope we all strive to achieve our best. To learn more about the Brylan's Feat Foundation and support children battling lymphedema, please visit www.brylansfeat.org and follow us on Facebook and Instagram @brylansfeatfoundaiton.

Brittany williams

Founder / Executive Director of Brylan's Feat Foundation


If there is one thing that confuses personnes after they’ve had body contouring, it’s whether or not ( and how ! ) to wear a compression garment. This article will answer all your questions about wearing compression garments. We gathered the most common questions from patients across the globe to create the most comprehensive guide you will find anywhere online. In this article, you will learn about the benefits of compression, how to wear one properly, and even some tips for hiding your post-op garment under clothes.

Compression garment are an important part of postoperative care. Wearing a compression garment can make an impact on your surgical results, speeding recovery and helping to shape your new silhouette. They speed the healing process, which means you can get back to living your life sooner after surgery.

Wearing a compression garment takes a lot of guesswork out of the equation when it comes to your results. They help stabilize and shape your body’s new contours so they heal as your surgeon intended. Patients who wear compression garments may experience less pain compared to those who do not wear them.

So, what do compression garments do exactly ? The idea is to help close the space that is created within the abdomen as a part of body contouring surgery. When a patient undergoes a tummy tuck, the flap of skin is elevated off the abdominal wall, leaving a space. The same thing occurs with body lift procedures, which also create a gap between skin and tissue. Liposuction, too, results in a void where the fat used to be.

When skin and muscle are elevated, you want them to heal in the acceptable position. One goal of compression garments is to encourage tissue to re-adhere to your abdominal wall by closing the space with gentle, constant pressure. Compression may help tissues re-adhere exactly as intended by keeping everything in its proper place.

Reduced swelling : If you are wondering how to reduce swelling after a contouring procedure, a compression garment will do just that. It helps restrict the edema that occurs after surgery by applying firm pressure to the area.

Lower risk of bruising and bleeding : Wear post-op garments are shown to reduce hematoma and decrease the chance of postoperative bleeding.

Speeds the healing process : Patients who wear compression garments after body contouring surgery may be able to return to their normal daily activities sooner than those who do not. They can improve oxygen levels in soft tissue, allowing faster tissue repair. 1 Some brands like Lipo-elastic even have perforated material that nuances only some parts of the skin to increase blood circulation. Increased circulation promotes faster recovery.

Shapes

Potentially reduced risk of keloid scarring : Keloids can form when excess scar tissue grows over a healed wound. Compression therapy is the first line of defense against keloids since they can soften and break up keloid scar modules de formation

Reduced contamination risk : Like a Band-Aid, a compression garment can shield your skin from outside germs like a barrier. It protects the wound while you heal.

Less pain

Patients typically wear a compression garment for 4-6 weeks following larger body contouring procedures on average. For minor procedures, two weeks may be enough. The length of time you will need to wear a post-surgery garment may vary based on your surgeon’s protocol. It can depend on the amount of skin and/or fat removed, how much loose skin remains, your skin elasticity and other factors.

If you find wearing a post-surgical garment uncomfortable, it is worth mentioning it to your surgeon. They may be able to make adjustments or advise you on how to make things feel a bit more comfortable as your recover.

After surgery, many surgeons recommend wearing the garment day and night for the first 1-3 weeks, except to shower. Of course, this can vary depending on the exact procedure and extent of surgery. During the second période of recovery ( usually weeks 3-6 ), you may only need to wear the garment during the daytime. Some surgeons recommend wearing it around the clock, even in recovery période two, if you can tolerate it. Again, this boils down to your surgeon’s aftercare protocol.

This is a tricky question. Some surgeons use the words interchangeably, but they are not exactly the same thing. Both are post-surgical devices that apply gentle pressure to promote healing and reduce swelling.

SHOP NOW

Leave a Reply

Your email address will not be published. Required fields are marked *