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During my 15 years at UCB, I have witnessed an unwavering commitment to putting people at the heart of all we do. As I move into a new role as the U.S. leader of our Rare Disease Organization, I pledge to continue this important patient focus and ongoing interactions with people living with myasthenia gravis (MG) and other rare diseases to gather knowledge about their lived experience and unmet needs. There is still so much to learn from patients living with this disease so we can continue our quest for solutions, because we know that moments matter and that every moment is an opportunity to improve.

While June is MG Awareness Month, we are partnering year-round with patients, advocacy groups, and the MG community to raise awareness of MG — a chronic, autoimmune neuromuscular disease, where the body’s immune system mistakenly attacks the connections between nerves and muscles. MG may be hard to identify, and as a result diagnosis can often be missed or delayed, leading to worsening of disease progression. MG leaves patients with unpredictable symptoms that fluctuate daily, like fatigue, muscle weakness, and difficulty breathing and swallowing.1 Between 36,000 and 60,000 people in the U.S. are estimated to have MG.2 It is our hope that by participating in MG Awareness Month, we can bring light to the critical issues affecting MG patients and their families, and raise awareness about the journey from symptoms to diagnosis and treatment.

Recently, I had the pleasure of connecting with Glenda Thomas (right) about her experience living with the disease; she was diagnosed with MuSK MG nine years ago. As an organization whose purpose is centered around helping people live their best lives, it is a privilege to be able to share highlights from our conversation as an extension of this mission.

Kim: At UCB, we have entire teams committed to the investigation and development of new medicines for people living with rare conditions — this includes MG. As a person living with a rare condition, how important is it for pharmaceutical companies to do this kind of work?

Glenda: MG is a challenging condition to navigate as there can often be a misdiagnosis or a lengthy time to treatment or, more importantly, the right treatment. It is encouraging for people living with MG to know that pharmaceutical companies see us and hear us and are working hard to find solutions to lessen our disease burden. We need more treatment options, and we are counting on pharmaceutical companies, like UCB, to deliver them.

Kim: It’s unfortunate that for some, MG can be a particularly challenging condition to diagnose. What was your experience like?

Glenda: It took about two years from the time I first noticed symptoms to my diagnosis with MG. I first noticed that my eyelids were drooping when one of my girlfriends was taking a picture and she said, “Glenda, open your eyes.” I remember trying to raise my eyelids but nothing was happening. I then had blepharoptosis surgery to lift my eyelids. About another year passed and my symptoms started getting progressively worse. I realized I had lost a lot of weight because my clothes were baggy on me. I also had a droopy neck, which at first I attributed to strain from exercising. I visited a spine clinic for my neck when the doctor suggested I may have MG. That lead me to find a neurologist who diagnosed me with the disease.

Kim: In reflecting on your diagnosis journey, what would you say to yourself during that time, with what you know now?

Glenda: I would tell myself to not be afraid to advocate for yourself at doctors’ appointments. Sometimes doctors may not really understand you, and nobody knows your body better than you do. It’s okay to challenge your doctors and ask questions about your symptoms or probe about a particular treatment. It’s important to watch and listen to your doctor’s reactions when you are describing your symptoms and articulating your concerns. If you are not feeling that you are connecting with your provider, then it may be worthwhile to find another doctor.

Kim: And what would you say to someone who may be newly diagnosed?

Glenda: I would encourage newly diagnosed patients to educate themselves, first and foremost, but also to encourage their caregivers, friends, and family to learn more about their condition. I’ve heard a lot of MG patients say “my family doesn’t understand.” The more knowledge they have, the better they can support you through your disease journey. For example, my boyfriend has a great understanding of MG and is a support system for me. When I tell him that my muscles are getting tired and I need some time to sit down, he understands and respects that I need time to rest. It’s so important for patients to communicate to their loved ones how they can best be supported.

Glenda: Living with a condition like MG has had a major impact on my life, but I’ve been able to adapt thanks to a supportive family and fellow patient community. What is UCB doing to make an impact on those living with MG?

Kim: Well, first, we are so happy to be learning from you to understand better what matters to you and what your goals are for living with MG. Second, we are continually working to find ways to deliver medicines that may allow you and others living with MG live the best life you can. We are living out this commitment in several ways including:

  • Developing a promising pipeline of differentiated therapy options. These treatments have completed Phase 3 clinical trials, and the next step is to submit them for FDA review later this year
  • Focusing on patient-centered research, comprehensive disease and scientific education, and advocacy efforts so we can truly appreciate the entire healthcare landscape and world that those living with and caring for MG are operating in
  • And analyzing public policy opportunities that address current challenges facing patients, including accessibility, affordability, and telehealth

Read more from this interview and learn about UCB’s commitment to people living with MG and other rare diseases.