>
  

  Patient 
  Advocacy 
  Council

The Friends of NIDCR Patient Advocacy Council is comprised of non-profit organizations who work together to 1) support oral health research and NIDCR and 2) transfer oral health research from bench to bedside. 

At the end of the day, research is conducted to improve the health and lives of others. Below are quotes, stories, photos and videos that demonstrate the impact the Patient Advocacy Council has on the lives of many.

The FNIDCR PAC is co-chaired by Kathy Hammitt and Mary Fete.

View all the current members of the Patient Advocacy Council.

View all past Patient Advocacy Council Spotlight profiles.

  

 

American Behcet’s Disease Association (ABDA)

    American Behcet's Disease Association (ABDA)
  @ABDAbehcetsUSA



ABDAThe American Behcet’s Disease Association (ABDA) supports, educates and empowers the Behcet's community, while continuously advocating for better research, diagnostics, treatments and a cure. The organization was established in 1978 in Orange County, Calif., by Sheila Gregory, the mother of a young Behcet's patient.


What is Behcet’s Disease?

Behcet's disease, also known as Behcet's syndrome, is a rare chronic autoimmune, autoinflammatory disorder of unknown origin. Its manifestations are thought to be caused by vasculitis resulting in damage to blood vessels throughout the body. While Behcet's disease mainly occurs in young adults, typically in their 20's and 30's, individuals of all ages, genders and races may be affected, and symptoms vary from person to person. The most common symptoms include oral ulcers, genital ulcers, inflammation of the eye, skin lesions and arthritis.

Although Behcet's disease is recognized worldwide, prevalence is highest in countries in the eastern Mediterranean, the Middle East and East Asia. Current research suggests viral, bacterial, genetic and environmental factors may play a role in the development of Behcet's disease, but no specific cause has been established and no triggers have been identified. Epidemiological studies suggest there are approximately 16,000-20,000 cases of Behcet's disease in the United States (approximately one case out of every 170,000 individuals), but Behcet’s is considered rare because it affects less than 200,000 people. There is currently no cure and no FDA-approved treatment exists in the United States.


International Behcet’s Awareness Day

May 20 is International Behcet’s Awareness Day. Every year, the ABDA hosts a mini symposium and a Walk for Behcet’s during the week of Behcet’s Awareness Month. A patient hotline operated by trained patients (1-800-behcet) assists newly diagnosed patients, caregivers and health care professionals throughout the year.

The ABDA is a 501© nonprofit organization funded through generous donations. The organization is proud to participate in research and advocacy efforts.




Patient Story: Sandra McElgunn


"I have used many different biologics since getting diagnosed. It's a long, winding road of trial and error. I have tried to be a part of every research trial that is being studied, hoping that someday they find a cure.”

My name is Sandra McElgunn, I'm 65 years old and have had Behcet's disease since I was eight years old. When I was in third grade I was so sick for a whole year with high fevers, mouth ulcers, headaches, fatigue, joint pain and weakness. The doctors never could put a name to what was making me so ill. So they ended up calling it a mystery illness. I continued to have sickness throughout my teenage years and into my twenties.

When I was in my thirties I really felt something just wasn't right with my health and I started to search for answers. I once had a bladder infection with hundreds of unexplained ulcers inside my bladder for a whole year. My family doctor was puzzled, he ran many tests and sent me to several different specialists. I saw immunologists, dermatologists, endocrinologists, dentists and urologists. When I was in my early forties, I was referred to a highly recommended rheumatologist who was determined to get answers to what was making me so sick. After he did many tests and explored different avenues, he asked me if I have ever been told I may have Behcet's disease. He gave me some literature about this disease, and after reading about Behcet's, I instantly knew this is what I had. I was this rheumatologist’s first Behcet's patient, so he sent me to New York to see a Behcet's expert for a second opinion. When this doctor agreed with my rheumatologist, it was a relief to finally get a name of what was making me so chronically ill.

I have used many different biologics since getting diagnosed. It's a long, winding road of trial and error. I have tried to be a part of every research trial that is being studied, hoping that someday they find a cure. I volunteer for the American Behcet's Disease Association as their hotline operator and I have a passion for helping newly diagnosed Behcet’s patients and their caregivers. I like to try to stay positive, and active when this disease allows me to, but flares can disable me quickly. I stay courageous in my fight and never lose hope for that cure.




MY JOURNEY: “LIVING WITH BEHCET’S DISEASE”


I'm Mary Burke, 72 years young, I have volunteered with the Behcet’s Disease (BD) community for over 30 years.

I was adopted when I was six months told. I live in Blaine, Minnesota. At my last count, Minnesota has approximately 35 men, women and children diagnosed with BD. My husband and caregiver, Bob and I, have been married for 51 wonderful years. As you read about my journey with Behcet’s Disease, please remember…just because you aren’t exhibiting a specific symptom, now, it doesn’t mean you will never exhibit it. You never know what tomorrow may bring. Oftentimes, our symptoms appear sporadically. We can be feeling pretty good, and an hour later, be hit with a symptom flare. You can just hope and pray your family and friends are there for you if, or when, it happens!

Behcet’s Disease is a rare, chronic autoimmune, autoinflammatory disease whereby our immune system attacks and harms our own tissues, vessels and organs. It’s an extremely difficult disease to diagnose, because it’s made up of a collection of symptoms, which often do not occur at the same time. It’s extremely important to maintain records, pictures, etc.

I was diagnosed with Behcet’s Disease (BD) in 1983. My doctors and I soon realized I’d had many symptoms and flares since my childhood. As a child, adolescent, and young adult, I had many bouts of diarrhea, urinary and kidney infections, ear infections, headaches, and strep throat. So, I do know, and can sympathize and understand what my fellow Behceter’s (BDer’s) are going through, because I’m going through or have gone through it, too.

There are no tests, labs, etc., to confirm or deny a BD diagnosis; therefore, it can take years to get diagnosed correctly. There is no known cause, and no known cure, but one thing I’m sure of...it isn’t necessary in obtaining a proper diagnosis to be from or visited the countries along the Silk Route, as some doctors may tell you. Nor is it true BD will get better or disappear as you age.

Behcet’s Disease symptoms can and do vary from patient to patient. There may be flares and periods of remission. This is also true with the medications used to treat the symptoms. In other words, there is no one medication that helps all our symptoms. A medication that may work for one of us may not work for another…even when using the same medication to treat the same symptom(s). As a side note, there is no FDA approved treatment for Behcet’s Disease. My doctors and I are constantly fighting my insurance company to approve medications.

Some BD patients may be told by their doctors, “BD burns out as you age”. Again, every BD patient is affected differently by this disease…for some this is true, for others, including me, not so much…above all, hope is key when dealing with a chronic illness.

Prednisone is a commonly prescribed medication used to treat individual BD symptoms. Systemic flares/symptoms are treated much more aggressively, and many of us use a combination of medications to treat our systemic symptoms. The reactions I’ve gotten from many of the medications I’ve used were worse than symptoms themselves, as is the case with others as well. I’m fortunate to have a great group of doctors, and the support of family and friends.