Lymphedivas President, Josh Levin, was my guest on today’s podcast. He talked about what lymphedema is and some potential risk factors for developing the disease. He shared his sister, Rachel’s, experience with breast cancer and lymphedema, which led to the creation of Lymphedivas. Josh carries on his sister’s legacy through the company, which focuses on education and providing choice and options for those experiencing lymphedema. They offer individualized and trendy compression garments.
Josh Levin is the current President of Lymphedivas, which is a company founded in 2006 by his sister, Rachel.
Lymphedema is a disease that can be either a primary disease, meaning that someone is born with it, or a secondary disease, meaning that there is some type of relationship with the treatments of another disease. It becomes a complication for those with breast cancer when lymph nodes are removed and/or when an individual undergoes radiation therapy, which can have an impact on the lymphatic system. There are no current studies available to dictate someone’s actual risk of developing lymphedema; however, it is suggested that someone that has a full axillary dissection and radiation may be at a higher risk but the level of risk is unclear. While a sentinel lymph node biopsy can provide the information that is needed, 3-4 additional nodes are usually removed and there is still a risk of developing lymphedema. In addition, lymphedema can develop many years down the road.
It is important that individuals are made aware of and understand the risks that are involved and make decisions based on that information to reduce any possible risks. In addition, individuals need to know how to recognize the symptoms and get ahead of it before it gets worse. Josh shared that carrying a purse on the affected side may be a risk factor. Sitting in a hot tub may be another risk factor. Anything that cuts off the flow of the lymph fluid may be a risk factor.
Josh’s sister, Rachel, was diagnosed with and had completed treatment for breast cancer at the age of 35 years old. Rachel started to notice a heaviness in her arm and knew something was not right. Her doctor acknowledged that she was experiencing lymphedema and wrote a script for a compression sleeve. Rachel went to the DME store to pick up the sleeve and it was not what she had expected.
While commiserating with a fellow cancer survivor, Robin Miller, the two of them decided to make a compression garment that women would actually wear. Rachel wanted to bring the medical-grade compression and sports progression together in one garment. She created something that addressed not only the mechanical need of the garment but also the emotional need of the person. Josh shared that Rachel was unhappy with the perception of the traditional compression sleeve. It looks like a band-aid and people would ask her what happened but when wearing a lymphedivas garment, the conversation changed. Rachel wanted to do more than just create a product; she wanted to provide the educational aspect as well.
Though Rachel has since passed away, her family has carried on her legacy through the company. Her father took over the company and then Josh took over the company about 10 years ago. The company creates two new designs each year through observation of trends as well as offering a survey to followers. The goal is to provide choices and options.
Lymphedivas provides graduated compression garments, which provides the most amount of compression at the farthest point away from the core. It helps to promote the flow of lymph fluid from the wrist back to the core. In addition, gauntlets and gloves are provided to reduce the risk of developing lymphedema in the hand due to the high level of compression at the wrist.
Garments may be covered by insurance but it depends on the individual insurance plan. Some plans include coverage but others do not. At this time, Medicare does not cover compression garments. Attempts have been made to pass the Lymphedema Treatment Act over the past 11 years to get compression garments covered by Medicare, which may open the door for private insurance companies to cover the garments.
Josh notes that Lymphedivas is one of the last companies that has all materials sourced in the USA, which was important for Rachel as well.