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Get Connected

When a person has a rare disease, they often feel isolated, confused, afraid, and hopeless. Living with a chronic medical condition that no one around you has ever heard of let alone understands is a challenge on many levels. With rare diseases especially, even health care professionals often don’t understand the disease well, which can add to your confusion and fear. Combine that with the challenges and isolation of COVID-19 confinement, and you may find you’re wading knee deep in serious hot water with mental health issues.

Those who care for someone who is diagnosed with a chronic, debilitating, and mysterious disease can also be devastated. Often you must sacrifice your own goals and dreams in order to attend to the needs of your loved one. Depression is common in caregivers who often suffer in silence, unwilling to reveal their own negative feelings.

Connecting with a support group can be a tremendous help, however. Such groups can be an important source of both emotional encouragement and practical advice. Benefits can include:

  1. Meeting and making friends with other people who live with the same rare disease and similar experiences
  2. Learning about the disease and how it is treated
  3. Being able to talk honestly about your disease and your feelings about it with others who “get it”
  4. Learning how others cope with the challenges of the disease
  5. Developing hope and a sense of empowerment that you can make it through the challenges

Formal patient support organizations often expand their reach to include advocating to improve healthcare for other rare disease patients, supporting scientific research, and providing financial assistance to members.

CSI Pharmacy wants our patients to thrive, despite their health challenges. That’s why we connect with a number of groups that support the patient communities we serve. These are all nonprofit organizations, and CSI Pharmacy supports them financially so they can support our patients and caregivers. We encourage our patients to reach out to one or more of the following groups, especially at this time of uncertainty during the COVID lockdown:

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Patient communities

Honoring Our Rare

As the shortest month of the year, February is always the rarest month. Because of this, the last day of February has been chosen as Rare Disease Day. This year, however, is rarer still, because it’s leap year, the time when an extra day is added to the calendar: February 29. Which makes it an even better time to honor our rare disease patients!

Rare Disease Day is a time when advocates take to the soapbox to raise awareness for the more than 6,000 rare diseases that have been identified worldwide. More than 300 million people are affected by these diseases at some point in their lives, which adds up to about the population of the United States!

CSI Pharmacy works with a number of rare disease organizations to bring awareness and education. Among these is Myositis Support and Understanding. Founder Jerry Williams was diagnosed with polymyositis in 2003. He is a tireless (despite the fatigue of his illness) advocate for those living with myositis diseases.

Like many who live with a rare disease, Jerry’s myositis journey has been long and challenging. It started with muscle pain, severe weakness, muscle wasting, and fatigue. Initially, when they couldn’t figure out what was going on, doctors told him these symptoms were all in his head. Even after being identified as myositis, his disease has resisted treatment and been riddled with complications. He’s spent long stretches of time in the hospital over the last 17 years with flares, infections, and other complications. Myositis has even forced him to end his career in the banking industry and go on long-term disability.

“Leaving the workforce was a blow,” Jerry says. “I thought, what am I going to do? I knew I needed a purpose.”

Jerry set to work learning about this autoimmune disease of the muscles. In addition to reading everything he could, he looked around for others who had myositis. He knew their first-hand experiences would be at least as helpful as the information from medical sources.

Through this process, Jerry recognized there was a need for more patient-focused services and programs for those who live with myositis diseases. In 2010, he started a Facebook support group called “Polymyowhat: Understanding Myositis.” As the group attracted members with the several other forms of myositis in addition to polymyositis, he changed the name and eventually formed the nonprofit Myositis Support and Understanding (MSU). The all-volunteer organization is run completely by those who are directly affected by myositis, including patients and care partners. Jerry serves as President and Executive Director.

On this the rarest day of the year, Jerry’s message to others who live with rare diseases is never give up.

“Don’t accept the status quo,” he says. “When you’re diagnosed with a disease like myositis that limits your life, you have to find new ways to live your passion.”

Jerry has found his passion in helping to empower others who live with myositis to advocate for their best life. MSU now has two websites, several Facebook support groups, and live online video support sessions. MSU operates the official Myositis Support Community on the Inspire health support platform. They also provide educational programs, a smartphone app for tracking symptoms and treatments, clinical trials opportunities, and a financial assistance program.

“Living with chronic illness has also offered me some wonderful opportunities,” Jerry says. “It’s amazing the relationships I have built. And I never would have imagined working with a nonprofit as part of what I do and who I am. Now I can’t imagine not doing it.”

CSI Pharmacy is pleased to support the efforts of MSU and other patient organizations that are helping rare disease patients stay engaged with the world. We provide therapies uniquely suited to rare diseases, offering these therapies to more than a dozen patient communities. This month we are thrilled to honor those who daily cope with the challenges of the following rare diseases:

  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • Guillain–Barré syndrome (GBS)
  • Huntington’s disease
  • Immune thrombocytopenia (ITP)
  • Multifocal motor neuropathy (MMN)
  • Multiple sclerosis (MS)
  • Myasthenia gravis (MG)
  • Myositis
  • Pemphigus and pemphigoid
  • Primary immune deficiency diseases (PIDD)
  • Stiff-person syndrome (SPS)