Eight amazing advocates for people with chronic diseases

4.26.17

4.26.17

Last year, the Chronic Disease Coalition highlighted five outstanding health care advocates for their efforts to raise awareness and ensure patients’ voices are heard. Many more people have spoken up in the months since. Following are eight stories of patients who are making a difference for themselves and others.

1. Lauren Cephus: Advocating for kidney patients and people of color

Lauren Cephus is a Pennsylvania native who now lives in Florida. A retired social worker and member of Service Employees International Union, Cephus is also a kidney patient who now advocates for patient rights with a grassroots dialysis group. She is also involved with The Black Commission Inc., which addresses civil rights issues within the African American community – everything from education to health care needs.

With African Americans being disproportionately affected by kidney disease, it is important to build awareness and increase access to community resources.

“I will always be a social worker at heart, and I will always find ways to volunteer and help build awareness,” Cephus said. “With more and more people living with kidney disease, we need to make sure that there are enough resources being provided for everyone.”

Read her full story here.

2. Charis Hill: Representing patients with arthritis, autoimmune disorders and all chronic diseases

Charis Hill of Sacramento, California, is a model, a blogger and an activist – as well as an outstanding advocate for people living with chronic diseases.

When she was 26 years old, Hill was diagnosed with Ankylosing Spondylitis (AS), an autoimmune disorder and form of arthritis.

Hill has also dealt with depression, anxiety and post-traumatic stress disorder. Even so, she has only increased her efforts to advocate for the chronically ill: testifying on a bill to create more transparency in drug prices for health insurance policies in California’s state exchange; attending advocacy summits and speaking to members of Congress in Washington, D.C., for the Arthritis Foundation; representing patients at the American College of Rheumatology’s annual meeting; leading support groups; writing about these issues on her blog, “BeingCharis: A Voice For Many.”

“Advocacy to me is empowering,” Hill said. “I know that by finding the right words to share my story I have the potential to impact change in big ways.”

Read more about Hill here.

3. Stormy Johnson: Advocating for women and the hemophilia and bleeding disorder community

Stormy Johnson was an advocate for her son, who was diagnosed with hemophilia when he was 3 years old, long before she became an advocate for herself. When the Georgia resident was diagnosed with hemophilia B many years later, she knew her efforts would continue, especially when she realized that women faced unique challenges in the bleeding disorder community.

“Once I was diagnosed with hemophilia and saw how women were being treated by doctors, I wanted to do something about it,” she said.

Johnson is an ambassador liaison for The Women’s Bleeding Disorder Coalition and part of Hemophilia of Georgia’s camp leadership team. You can read more about her here.

4. Katie Wilkes: Raising awareness about melanoma and other types of cancer

Katie Wilkes of Portland, Oregon, was only 23 years old and a week into a new job at Oregon Health and Science University (OHSU) when she was diagnosed with melanoma, a type of skin cancer. Having cancer is a hard thing for one to accept at any age, and as a woman in her 20s, Wilkes was unsure of how to handle it, or even how to talk about it.

She wanted to find a way to reach those who might be going through the same feelings of isolation she initially felt. She started her own blog, Pretty in Pale, to chronicle her life as a skin cancer survivor. Since 2012, she has kept a running log of everything skin cancer related, from reviews of sunscreen products to pieces debunking the “base tan myth.”

To Wilkes, the patient’s perspective and interests must be an essential part of any health care effort. The activism she has pursued brought rich knowledge for the benefit of all patients.

“People who have lived with the disease bring this rich knowledge to the things they do,” Wilkes said.

Read her full story here.

5. Bridget Hunnewell: Empowering people living with bleeding disorders

Diagnosed with afibrinogenemia when she was 2 days old, Bridget Hunnewell has had to live life cautiously. But she has never let her bleeding disorder define who she is.

For Hunnewell, advocacy is about raising awareness and empowering others to live the best lives possible. While she struggled to find her voice at a young age, Hunnewell is now a strong supporter and advocate for those living with afibrinogenemia. The genetically inherited disorder prevents the blood of those who have it from being able to clot because of a lack of the protein fibrinogen.

“I will continue to help build awareness around a disease that many people don’t understand and let others with afibrinogenemia know that they are not alone in their journey,” she said.

Read more about Hunnewell here.

6. Lisa Clifford: Standing up for patients who rely on charitable premium assistance

Born with one kidney, Lisa Clifford has struggled with chronic kidney disease her entire life. In recent months she has taken a stand against another major life challenge, speaking out against health insurance companies’ discriminatory practices.

“The reason why insurers are targeting kidney patients is because they don’t want to pay for the expensive treatment costs that kidney patients need to survive. That’s the bottom line,” Clifford said.

Clifford continues to advocate for her fellow kidney patients, hoping to help those also living with chronic kidney disease.

“If you don’t get the word out, things will never change,” she said.

Read more about Clifford here.

7. Bridget Mildon: Bringing hope to patients with neurological disorders

Bridget Mildon started FND Hope from an Idaho hospital bed in April 2012. At the time, she was suffering from stroke-like symptoms and was having trouble seeing, performing basic motor functions and even walking. It took multiple visits discussing her symptoms with numerous medical doctors before one finally diagnosed her with functional neurological disorder.

Wanting to help people who were in a similar situation as her, Mildon started FND Hope as a website where patients could talk about their symptoms and learn from each other. FND is a nonprofit that advocates for patients experiencing debilitating functional symptoms but whose causes aren’t known. The organization provides information about FND and hosts Facebook groups for patients to interact and receive peer-to-peer support.

“I felt that if I didn’t help patients keep looking, I was doing them a disservice,” she said.

Click here to read more about Mildon.

8. Yara Banks: Providing patients with access to advocacy resources

When Art Banks was diagnosed with kidney disease and needed a kidney transplant, he and his wife, Yara, quickly learned there was no central group that focused on providing the answers or resources they needed. In response, they formed A.T.L.A.S., Access to Life Advocacy Services, to serve as a central resource point for dialysis patients.

“The biggest thing we want to do is to empower people with kidney disease – empowering them to help make the best of life,” Yara Banks said. “And that includes providing all of the information they need to help make informed treatment decisions.”

Read more about Banks and A.T.L.A.S. by clicking here.

Read last year’s recap on promising patient advocates, or please join us to learn more about how you can help protect people living with chronic disease.