BIP 's Cam Ayala Teams Up with Kathy Bates to Raise Awareness for Lymphedema: 'My Lymphedema Sister'

Cameron Ayala and Kathy Bates
Cameron Ayala and Kathy Bates
  • Oops!
    Something went wrong.
    Please try again later.

Craig Sjodin/ABC via Getty, Amy Sussman/Getty

Cam Ayala and Kathy Bates are teaming up to raise awareness of the "debilitating" disease lymphedema.

Both the former Bachelorette contestant and actress suffer from lymphedema, a chronic disease with no cure that results in the buildup of fluid in soft tissues and causes swelling in the arms and legs. Lymphedema can be hereditary (primary) or it can develop later in life (secondary) after lymph nodes are removed in a surgical procedure or as part of cancer treatment.

Ayala, 33, was born with the disease, which mostly affects his right leg. After 16 knee surgeries over the past 7 years, he's preparing for another "transformative" procedure sometime over the next week: the amputation of his leg.

Though the idea is daunting, Ayala is "leaning into faith over fear" and is turning his lymphedema experience into something positive.

"It's been interesting talking about all the skeletons and demons in my closets and really grappling with grief and future loss," he tells PEOPLE. "I know a planned amputation is very different than a sporadic amputation, but I know that there's a bigger picture and a bigger story and a bigger purpose that God has for all of this."

RELATED: Wendy Williams Shares Photo of Herself Receiving Lymphedema Treatment: '45 Min Every Day'

BIP’s Cam Ayala Teams Up with Kathy Bates to Raise Awareness for Lymphedema
BIP’s Cam Ayala Teams Up with Kathy Bates to Raise Awareness for Lymphedema

Courtesy of Lymphatic Education & Research Network (LE&RN)

Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from juicy celebrity news to compelling human interest stories.

Unlike Ayala, Bates developed lymphedema later in life after she was diagnosed with breast cancer and underwent a double mastectomy in 2012. She tells PEOPLE that the condition is a common "souvenir" of the surgery that often goes undiscussed.

Though the American Horror Story star, 73, says she was "full of rage" when she developed the disease and experienced swelling in her arms, she decided to turn her frustration into something positive. She started raising awareness about lymphedema and became the national spokesperson for the Lymphatic Education & Research Network (LE&RN).

It was through the nonprofit organization that Ayala was introduced to Bates at a conference in 2019, when the two started bonding over their shared journey.

"We present very different clinically, in terms of me being a male with primary and she being a female as secondary, but we still have the same daily struggles just in terms of what is required of us to manage the chronic condition itself," Ayala says.

"When I met [Bates], I felt just such a sense of connection that this is like my lymphedema sister. She has gone through a lot of the same trials and tribulations that I have and we both have the same alignment and mission which is to help as many people with lymphedema as possible."

Says Bates, "I knew by meeting Cam that he had a tremendous amount of energy and passion to join this fight."

The Bachelor in Paradise alum says meeting Bates in 2019 was "life changing" and recalls how the star told him, "Your pain is your strength," which he believes resonates with all people dealing with lymphedema. The introduction also resulted in Ayala becoming an ambassador for LE&RN, which led to his current role as the nonprofit's Director of Development and Marketing.

"Pain is such an interesting teacher, right? It can transform you," Ayala admits.

RELATED: Kathy Bates on Battling Cancer Twice and Surviving Lymphedema: 'I Felt That Life Was Over'

That's why Ayala's journey managing his lymphedema — pre- and post-amputation — will be the focus of an upcoming documentary, which he hopes will create real change as he and LE&RN work with the Centers for Disease Control and Prevention and National Institutes of Health to get lymphedema more widely known.

"It's so difficult because doctors look at it as being cosmetic, but it's a life threatening disease that can affect millions of people," Bates explains. "Doctors spend anywhere from 15 to 30 minutes in four years of medical school on the lymphatic system, period. So if you go to a doctor, chances are they won't know what it is."

"People who have this disease either don't know they have it, or they hide because it's unattractive. You know, you'll see people with very swollen legs or swelling arms, they hide at home," she continues. "So if the doctor that they go to doesn't know about lymphedema — and there are many, many millions of doctors who don't know about it — your disease will progress to its more difficult stages."

Want to get the biggest stories from PEOPLE every weekday? Subscribe to our new podcast, PEOPLE Every Day, to get the essential celebrity, entertainment and human interest news stories Monday through Friday. 

Bates says they've been actively speaking to Congress to get support behind creating a national lymphatic commission to study lymphedema.

For Ayala, that's why the documentary is "necessary" to create, assuring it's "not about me, it's about we."

Patients often feel isolated or shameful when dealing with lymphedema and the stress it brings, Ayala says, adding that he wants to help them however he can.

"I want to fight for the lymphedema patients who passed away who never got to see a cure. I want to fight for patients who are still living, but then ultimately future lymphedema patients because with the hereditary component, there may be a likelihood that my future children will have lymphedema," the former reality star continues.

"So I want to do — pun intended — all the legwork now so that they hopefully won't have to fight as hard as we're fighting now."