It was the fall of 2017, and Sarah Brunskill was angry.
Her son Grayson was born the year prior with primary lymphedema, and Brunskill had been consumed with the struggle of finding the right treatment protocol and, in her words, attempting to not let the rest of her life fall apart.
“By the fall, I finally had got a handle on things, and I was angry,” Brunskill says. “I was angry that it took my husband and I a year to find the right information on how to treat my son.
“I was angry that it took six months for the insurance company to approve his much-needed day and night garments.
“I was angry that doctors kept telling us ‘I’ve never seen this in an infant’ and couldn’t tell us what to do.
“I was angry that we felt so alone in the whole process.”
After coming through the other side, Brunskill felt no family should ever go through what hers endured: something needed to be done. She redirected her anger into action by becoming involved with the Lymphatic Education & Research Network (LE&RN), an organization whose mission is to fight lymphatic disease and lymphedema through education, research, and advocacy. A few months later, she was asked to become the California Chapter Co-Chair alongside Dr. Emily Iker.
Along with her obvious passion, Brunskill brings unique experience to the co-chair position: she holds a master’s degree in developmental psychology and has a professional background as a program evaluation researcher working on national projects for a large hospital network.
“This background has gifted me with not only medical and healthcare literacy and an understanding of how the healthcare system works, but also the ability to read and understand complex research articles and translate them to everyday language for our chapter,” explains Brunskill.
“I feel like my professional background really allows me to seamlessly move between these worlds, which has helped a lot when finding the right information to share with our chapter members.”
A walk to remember
Around this same time, friends Barbara Harmer and Judy Burrows attended a fundraising walk for LE&RN in Santa Monica, California. The two women – both cancer survivors with secondary lymphedema – met through an online support group, and were excited to join the event with other lymphedema patients and advocates, as well as LE&RN spokesperson and actress Kathy Bates.
“I was inspired by the speeches I heard at the event of others speaking so passionately about the need for awareness, a cure, research to help us all,” says Harmer. “Ms. Bates was a powerful speaker who said so many things that I had been feeling and I thought I too could be of help.”
When Harmer was approached by LE&RN’s outreach director about becoming a chapter co-chair, she hesitated at first: she had no professional experience in being a chair, only a desire to help bring change.
She said she would do it if her friend Burrows would, too. “I didn’t have a clue [how to be a co-chair] and thought it would be more fun with her,” Harmer explains.
Lucky for Harmer – and for LE&RN – Burrows was on board, having also been inspired by the Santa Monica walk. The California Chapter had its co-chair team.
“We like to say that we are the ‘boots on the ground’ for LE&RN,” Burrows says. “I know that on a chapter level, what we can do best is rally a community of patients, family members, and medical professionals to raise awareness, share information, and raise money for LE&RN.”
Burrows developed secondary lymphedema eighteen years ago, after surgery for metastatic melanoma. Like many living with lymphedema, she accepted her diagnosis and did the best she could to control it.
After watching an interview with Kathy Bates on the Dr. Phil Show, Burrows realized there are doctors who specialize in lymphedema, and that there is pioneering work being done with medication and surgery to treat lymphedema.
“I never expected there to be a change in the status quo. In the last few years, I’ve witnessed change,” she says. “I’ve witnessed the explosion in colorful compression choices for leg lymphedema. And made connections and friendships through Facebook groups.”
The California Chapter has been working hard to continue the momentum of change. One way is through initiatives to spread the word about LE&RN and World Lymphedema Day: so far, the cities of Pleasanton, Coronado, Imperial Beach, San Diego, and San Jose have proclaimed March 6th as World Lymphedema Day within town limits.
Recently, Assemblymember Todd Gloria was able to champion the cause and push the Assembly to pass a proclamation recognizing March 6th as Lymphedema Awareness Day within the state of California.
The team is also gearing up for their 5th annual California Run/Walk in Santa Monica on June 23, 2019 – Harmer says they plan to make it “the best ever.”
A big agenda item for LE&RN is increasing awareness among medical professionals. The average American medical school graduate receives about thirty minutes of curriculum on the lymphatic system within a four-year medical education.
The co-chairs are trying to get the message out to all medical professionals so they can not only educate themselves and take advantage of LE&RN’s continuing education materials, but also to share the information with their patients.
When medical professionals aren’t properly informed, neither are their patients: In addition to more thorough education in medical school, Harmer would like to see it made mandatory in California that any patient who is at high risk for developing lymphedema be given information about lymphedema from their doctor.
“So many of us were never told [about our risk] and some go far too long with no information or misinformation,” says Harmer. “Knowledge is power and we as the patients need to be informed. New York state passed a law – if they can do it so can we, and hopefully the rest of the country will follow suit.”
A ripple effect
Sometimes the amount of work it takes to make a small amount of progress can be discouraging, says Brunskill, and it feels like you are working against a constant stream of misinformation about lymphedema and its treatment.
“I push through it with each success story I hear, someone commenting that something we shared helped them, people asking questions, someone saying they shared the information with their doctors, or that someone finally has the information they need to treat their disease after years of people doubting them,” Brunskill shares.
“All of this, while small, over time grows bigger into a ripple effect, and fights the misinformation and misconception. If I can make those ripples ever so slightly bigger and empower people with the information they need to fight for their healthcare rights, I call it a success.”
When asked what inspires her in her daily life, Brunskill doesn’t hesitate: “My son, Grayson, and how he faces every challenge he is given, but is still so incredibly happy and silly. Plus, his laugh is pretty infectious.”
What does World Lymphedema Day mean to the LE&RN California Chapter co-chairs?
“This is a day for those who are largely doubted and misunderstood, not only by the general public, but, at times, the medical community,” says Brunskill. “This day means ‘we matter,’ ‘I am not alone in this fight,’ ‘my disease is real.’ It’s a day where we can come together and demand that the world hears us.”
“As an advocate, trying to make a change for the better is my goal. Every little bit helps,” says Harmer. “I firmly believe if we keep speaking out ‘Loud and Proud,’ change will come.”
Some think that advocacy needs to be a big undertaking, but the California co-chairs say that’s not the case. “Fit it into what time you have and your schedule,” Brunskill encourages. “No task is too small or unimportant.”
Brunskill offers a few ideas:
- Bringing any of LE&RN’s 10 Thing fliers to any of your medical providers – they could learn something and recognize the signs sooner for someone else.
- Creating or attend a lymphedema support group – sharing your story with others is a powerful way to connect with someone else, to not feel alone in this battle, and learn from others.
- Follow any of the LE&RN Chapter pages, even if they are not your state/country – you will find great information about how to treat your condition and know how to better identify misinformation.
- Write to your city council and Mayor about getting your town, no matter how big or small, to declare March 6th as World Lymphedema Day – public awareness and name recognition is HUGE. Think about the dramatic increase in public awareness about BRCA2 after Angelina Jolie went public about her elective double mastectomy. This led to a rise in genetic testing and now BRC2 is a widely recognized term. In a small way, we can do this too, but we have to start somewhere.
“I want lymphedema to be as commonly known as MS, AIDS, et cetera,” Harmer says. “I want World Lymphedema Day to be known by everyone everywhere that we need and deserve help from the medical community, insurance companies, and the federal government.”
She pauses. (“I am getting my blood pressure up now,” she says.)
“Lymphedema is not a cosmetic problem – it’s a disease and needs to be addressed,” Harmer continues. “I may not see a change in my lifetime, but I sure hope what I can do now with my time and energy will help those down the road. Like beautiful Grayson. He deserves a life with a cure.”