At NORD’s 2018 Rare Impact Awards, Rare Disease Report® sat down with Estelle Benson, founder of GBS|CIDP Foundation International, to discuss what the organization is doing to fight GBS.
At the National Organization for Rare Disorder (NORD)’s 35th Anniversary Celebration and 2018 Rare Impact Awards, Rare Disease Report® sat down with Estelle Benson, founder of GBS|CIDP Foundation International, and recipient of the Abbey S. Meyers Leadership Award, to discuss Guillain-Barré syndrome (GBS) and the work her foundation is doing to promote awareness and education of a disease that affects about 1 person in 100,000.
GBS is a rare disorder where the body’s immune system attacks part of the peripheral nervous system, according to the National Institute of Neurological Disorders and Stroke. Patients with GBS typically experience weakness or tingling sensations in the legs early on, with symptoms potentially increasing in intensity until certain muscles cannot be used at all. In severe cases, such as Benson’s husband, a patient can be rendered paralyzed.
Rare Disease Report®: Can you describe what you experienced when your husband was diagnosed with GBS? How did he inspire you to create GBS|CIDP Foundation International?
Benson: In 1979, my husband had a bad cold and a slight touch of pneumonia, and a week later, he was paralyzed. We had never heard of Guillain-Barré syndrome (GBS), there was no one to speak to, there was nothing to read, and there was no treatment. The only treatment that they gave him was some steroids, and for sleep and pain—wine. He was the only one with a bottle of wine in the intensive care unit on his night table. We vowed that if he lived, we would do something about it. We kept that promise, and a year later, we started with 8 people in our home. I thought it would be a nice, small support group. Now, we’re 40,190 chapters in 46 countries and we’re very proud of what we do.
RDR: What was that growth like?
Benson: Quite frankly, the growth just happened; it just happened. Little by little the word got around and I became involved with NORD. I heard about NORD when they started, and I would travel up to New York and meet with others as NORD was becoming the home for rare disorders and Abbie Meyers was my mentor and through passion and dedication we realized how to begin a patient group. I always do things in a layering process; we would do 1 layer before the other, little by little, we started with chapters, and a 501 c3, Board of Directors, Medical Advisory Board—there’s a whole process to get started, you don’t just wake up and start a foundation; it takes time. But it has been 30-some years, and we are very proud of what we’ve done.
RDR: Can you tell us a little bit about the organization’s mission?
Benson: Our primary mission is to help the patient; it was not primarily for research, it was not for fundraising, it was to help make sure that no one with GBS is alone. Now, we embrace other variants of GBS, such as chronic inflammatory demyelinating polyneuropathy (CIDP), multifocal motor neuropathy (MMN), Miller-Fisher syndrome—there are so many little variants, so we embrace them, and we help those people, too. We help them to find the proper diagnosis, the proper physician, and now, we also do education, support education research—we do a lot for research—and now, we are into advocacy.
RDR: What kinds of services does the organization provide to patients and providers alike?
Benson: Yes, as I said, the focus is on the patient, so we’ve never lost sight of that. We do a symposium every other year and we bring in the ‘thinktank of neurology’ which are our global Medical Advisory Board, so that people from all over can interact, and they are privy to diagnosis and conversations they would never have had. We’re very proud that we do that. Other years, we have regional meetings, a mini-symposium, and then we also do regional meetings for CIDP, which is the chronic form of GBS, so they can listen to information about what they have and have the opportunity for Q&A’s. Many times, they are not diagnosed properly, so we offer a lot of services for the patient and we’re very proud of that; we’re so proud that we don’t forget them.
RDR: As a caregiver, from your perspective, and even from your husband’s perspective, what do you wish health care providers would take into account when they’re working on a diagnosis and a treatment for a rare disease like this?
Benson: Because of the efforts of the foundation, the diagnosis is easier today. We have made these posters to put in emergency rooms reminding providers to consider GBS as a diagnosis. If somebody comes in shuffling, tingling, losing control, do not think that they are having a stroke or that they’re on drugs. Consider GBS, and if they are properly diagnosed they can start a treatment. Because of the efforts of the foundation, we have intravenous immunoglobulin (ivig) therapy, plasmapheresis, and a combination of other therapies that are also used. We’re very proud of that.
RDR: I also heard that May is GBS|CIDP Awareness Month. Can you discuss the annual Walk & Rolls for GBS|CIDP that your foundation hosts?
Benson: The GBS Awareness Month is an effort to make it a household word. A lot of people know about amyotrophic lateral sclerosis (ALS) and muscular dystrophy, but Guillain-Barré strikes a lot of people and it’s interesting how many patients we have, and people say, ‘Oh, I never heard of it.’ Well, they’re never heard of it because it has not yet become a household word. That’s what we aim to do; we try to bring visibility, we do Walk & Rolls. All over the country, we will be having Walk & Rolls where they only walk a mile—that’s about all they can walk—sometimes in crutches and sometimes in wheelchairs, that’s why we call it ‘Walk & Rolls.’ And so, it brings awareness; people come with teams. We do a little fundraising, but our chapters are there for the people and they do a lot of meetings, also to raise awareness of this condition.
RDR: What kind of educational resources does your foundation offer for health providers that they can utilize to help improve patient care?
Benson: We try to educate the nurses; we do a lot of medical workshops with nurses, PTOCs, doctors, and try to make them aware of the disease and to consider it. A lot of doctors have never seen Guillain-Barré syndrome. For a lot of neurologists, the patient will call and say, ‘My doctor said I’m the worst case he’s ever seen.’ And I say, ‘How many has he seen?’ And it turns out, that he’s only seen one, and so, it’s hard to compare. That’s why we really try to educate; we put out literature and information. We also go to the annual Peripheral Nerve Society meeting, the annual American Academy of Neurology meeting, and all of those professional conferences where they can learn about our condition.