Karen Kemper, MSPH, Ph.D.
Scleroderma Consumer Reviewer

Scleroderma is a rare disease that most people have never heard of, and many that suffer from the disease wish that they had never heard of it. To make matters worse, as Karen Kemper soon learned after being diagnosed with scleroderma when she was only 31 years old, even for those people who have heard of scleroderma, most will never understand the immense responsibility and effort it takes to manage the disease. Karen is a university professor with a focus in public health and health promotion. She feels that it is one of her missions as a health educator and scleroderma advocate to expose undergraduate public health students, many of whom aspire to work in medical or research settings, to scleroderma as a disease and to her circumstances as a person living with this chronic disease. Karen is always very direct about her motives and wants her students to know about scleroderma so that, if they are ever presented with a patient who exhibits the symptoms of the disease, they can help that person get the care they need more quickly and with dignity.

It is often very difficult for those with scleroderma to explain their disease to their family and friends because people with scleroderma do not always have the appearance of a person with a chronic, often lifelong, autoimmune disease. Scleroderma is most simply described as an overproduction of collagen that leads to a thickening, tightening, and hardening of the skin, connective tissues, and internal organs. As the disease progresses, it affects all of the joints and tissues, making most things people take for granted difficult and painful. Karen has taken pleasure in nature and exploring the outdoors, but is now finding it increasingly more painful to do things she once took for granted—like dressing, making a bed, flossing her teeth, turning a key, being in a room longer than 3 minutes if it is not heated to 76 degrees F, lying down to sleep, biting into a sandwich, or opening a food container. Like most people with the disease, she has come to accept that pain and fatigue are a regular part of most of her days.

Karen also has a hard time explaining to her friends and family the trepidation she has being outside an environment she can control. It is not about her being “uncomfortable,” but rather that she has to think through countless scenarios in her brain in order to prevent more damage from the disease. She must constantly weigh the pros and cons of all situations and try to prevent complications of the disease like the formation of another digital ulcer that may cost her a finger, or the aspiration of food that will damage her esophagus, or the breathing of cold air or irritants that will speed up fibrosis in her lungs. She devotes a considerable amount of her energy to managing her disease, and most of her days consist of spending countless hours at medical appointments and tests, making medication decisions, technical reading, and risk negotiation.

Unfortunately, Karen knows that her careful management of her disease will not provide a cure, only slow it down or minimize her suffering. Scleroderma has also forced Karen to face personal losses and her mortality much earlier in life than she would if she had never developed the disease. However, Karen has found strength in her diagnosis. She has learned a lot about grace and being healthy in spite of her disease, and she has created a beautiful life for herself regardless of the ugliness that comes with scleroderma; for that, she is grateful. Karen’s diagnosis prompted her to help others with the disease, and she participates in advocacy efforts through the Scleroderma Foundation. Karen has served on the South Carolina Chapter of the Scleroderma Foundation as Vice President since 2010 and as a board member since 2006. She is active in the foundation, attends the annual national patient education and leadership training meetings, and shares the information she learns with members of her local chapter.  

Her advocacy and tireless efforts earned her a nomination from the Scleroderma Foundation to sit on the Scleroderma Research Program (SRP) Peer Review Panel for the inaugural cycle of grants in fiscal year 2020. Karen has been very impressed by her experience with the Congressionally Directed Medical Research Programs (CDMRP), of which the SRP is a part, and values the genuine respect and support given to consumer reviewers. She has met other consumer reviewers through the CDMRP and is always in awe of the diversity of diseases supported and the array of backgrounds represented. As an advocate for the patient community that an SRP grant is intended to impact, Karen feels an additional responsibility to think of the larger community and to raise issues that would be important to them even if she has no expertise in the science. She has found it highly inspiring to witness the work of the researchers and clinicians committed to treating and curing scleroderma patients.