Skin Warriors

Skin Patients are often Subjected to Prejudice and Regulations. Now They Tell it Like it Is.
Preet’s story: Living with eczema Meet Preet Bhogal, a CSPA Board member with eczema. Interviewed by Christine Janus Please tell us about yourself and your history with eczema. My name is Preet Bhogal. I was born in Halifax, Nova Scotia, and now live in Ottawa. I was diagnosed with eczema as an infant and was hospitalized several times as a child. It was rough. How does eczema affect your daily life? It influenced my everyday life a lot more when I was younger, but now it’s only an issue if I’m having a flare. However, it affected my family drastically when I was a child. Now it’s something I manage on my own. How does it affect your personal relationships? When I was younger, especially during my adolescent years, my eczema had a significant impact. You spend so much energy worrying about what people think when you’re young. I would distance myself and hide because I was so insecure. As an adult, however, it doesn’t alter my relationships much. Having eczema is just a simple fact of my life. Have you ever been on the receiving end of comments about your condition? I do have memories of people not being very nice when I was younger. A kid at school once said I had “old-man hands.” And some adults believed I was contagious. Now my eczema isn’t very obvious. In fact, most people are surprised to learn that I have eczema. Give us some tips for effective management. I’ve been living with eczema for three decades, so I’ve learned a lot over the years. My options have expanded thanks to research and new treatments, but the best advice I ever got was when my dermatologist said to just “see what works.” What steps do you take to manage your condition? I’m very careful with soaps, detergents and skin products. I’ve learned by trial and error. I always stay up to date with a prescription for my medicated cream. When it’s extremely hot, staying indoors with air conditioning helps. I’m aware of my diet and try to avoid stress because that is my biggest trigger. Which resources out there are most helpful? The Eczema Society of Canada is great, as is the CSPA website. I have learned a lot online, and especially by talking to other patients. My dermatologist is there in case of complications. What kinds of support help you most? As a kid I did meet others with similar problems, but it was always at the hospital or a camp for kids with skin conditions. Meeting other patients who are out there living life (and thriving) with a skin condition has taught me to be a lot more comfortable with myself and in my own complicated skin. Have you ever wished for more support? More support in terms of related mental health issues would have been helpful. Eczema causes a lot of emotional scars, along with the physical. The eczema might not be a pressing concern in my life at this point, but it has shaped my life more than anything else. What would you like people to know about being an eczema patient? To those who don’t believe eczema is that serious a problem—try to understand how much having a skin condition affects someone’s life. And to other skin patients, I would say don’t hide your skin. Learn about your condition and what works. Talk to other patients and your dermatologist. See yourself as a person brimming with potential. Don’t let the disease define you. Sonia’s story: Living with Stevens-Johnson Syndrome (SJS) and toxic epidermal necrolysis (TEN) Meet Sonia Whyte-Croasdaile, a Jamaican-Canadian. She lives with SJS and TEN, two forms of the same rare, life-threatening illness of the skin, mucous membranes and internal organs. Interviewed by CSPA Board member Preet Bhogal Please tell us about yourself and where you live. I was born in beautiful Jamaica and now live in Milton, Ontario. I am founder and president of Canadians Against Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis (CAST). How long have you been an SJS patient? In 2011, I experienced flu-like symptoms with red itchy eyes, and was prescribed eye drops. The next day, I was in emergency with severe symptoms. I was later diagnosed with SJS; physicians believe the cause, in my case, is an extreme allergic reaction to medication (the eye drops). Treatment for SJS is usually provided in intensive care because the body burns itself, resulting in painful reddish-purple rashes that rapidly become blisters. How does your condition influence your daily living and your family’s? My family was devastated as they witnessed my transformation. After my discharge, I experienced dryness in the mucous membranes, blurry to sometimes no vision at all, and sores all over my body. The skin peeled off my palms and the soles of my feet, and all my nails fell out. I struggle now with severe lethargy and Sjögren’s syndrome, and have trouble swallowing. Each day brings new challenges; however, my strong religious beliefs help me face them one day at a time. Does your condition affect your personal relationships? I have always been the life of the party and I haven’t let this illness redefine me. I often use humour as a coping mechanism. My husband and I have a very close relationship, and next to my faith, he is my tower of strength. I am also blessed with a wonderful family and great friends. Have you ever been on the receiving end of stares? SJS altered my appearance temporarily and it was very hard to deal with stares. The most unpleasant one was from my four-year-old grand-nephew. His look jolted me, confirming how much my appearance had changed. Tell us about the education and support you have received on effective management. Most of what I learned about SJS I found out on my own, but I longed for more info and support from other survivors. Now, I work with Sunnybrook Hospital, the leading Canadian treatment site, and with CAST (see below). How do you manage your condition? The risk of recurrence is high as there is no proven effective treatment. I keep my immune system strong, wear a medical bracelet and always carry a list of medications to avoid. My body is extremely sensitive to heat, sun and light, so I spend a lot of time indoors with decreased lighting. What would you like people to know about being a SJS patient? Recovery can take months and there are numerous long-term issues. If you or someone you know is a victim of SJS, you are not alone. John’s story: Living with neurofibromatosis (NF) Meet John Huynh, a marketing analyst and soccer enthusiast. He lives with NF, a genetic neurological disorder that causes multiple tumours to grow along nerves of the body. Interviewed by CSPA Board member Preet Bhogal Please tell us about yourself and where you live. I am 35 years old and live in Toronto. I was diagnosed with NF type 1 when I was nine years old. How does your condition influence your daily living and your family’s? During my childhood, NF caused few problems except for a few minor surgeries. At 18 years of age, I developed tumours on my spine, which made walking difficult. Over the years I have had 10 surgeries. I know my family worries about me—my mother especially because she does not know how my NF will progress. Does your condition affect your personal relationships? Growing up, I was teased. Teachers thought I had chicken pox. Dating was a challenge, but I am fortunate now to be in a loving relationship with an amazing woman. How do you manage your condition? There’s currently no cure for NF. I visit with my medical team on a regular basis. If tumours are causing problems, then surgery is required. I do experience pain because of the tumours on my nerves. Have you ever been on the receiving end of stares? Occasionally, but I learned to tune them out. Once at the gym, a man asked, “So what does the doctor say about you?” It was perhaps his way of asking if I was contagious. I told him I wasn’t and went about my business. What would you like people to know about being a neurofibromatosis patient? Approximately one in 3,000 people has NF. It affects everyone differently. Some may not even know they have NF; others will experience complications such as pain from tumours and social stigma. Many people with NF also have some form of learning disability. Has NF ever got in the way of doing what you wanted? It does change the way I do things, but it doesn’t get in the way of my doing things. Physically, I am weaker and not as mobile, but I’m still active. Also, my employer accommodates my needs, allowing me to be at my best on the job. What is the one thing—besides not having neurofibromatosis—you would change about your life? Nothing! I do want greater awareness about NF and more attention on research. Society as a whole needs to accept everyone, regardless of disability, skin condition or what they look like. I believe it’s important not to spend too much time worrying about your condition or what people think, or you will miss out on what life has to offer. Join John and others! The Neurofibromatosis Society of Ontario offers a toll-free information line, assistance to local support groups, research initiatives and a network to the medical community. Contact them at www.nfon.ca orvisit them on Facebook. About Allan Stordy When Allan Stordy was five years old, he had an accident with a knife and lost an eye. He thought it was the worst thing to happen to him until he was diagnosed with psoriasis. The sluggishness and self-consciousness that skin patients know all too well took their toll on Allan until he decided to speak up, and become an advocate and “Skin Warrior.” Allan grew up in the community of Kinkora on Prince Edward Island. After graduating from Dalhousie University, he headed out west to Calgary looking for work and has now been there for more than 30 years. He is married with four sons, and runs a human resources company that requires a lot of engagement with the public. Living with psoriasis Growing up surrounded by family, Allan was acquainted with skin disease. “My uncle had psoriasis and as a child I felt bad for him. I was terrified I would get the same condition.” At 29 years old, Allan felt an oily spot on his scalp that developed into moderate to severe plaque psoriasis. Allan has tried many different treatment options over the years. “Some have worked better than others. Sometimes creams worked. Light treatments worked well, but tended to interfere with my work/life balance. In addition, a treatment that works can suddenly stop, forcing you to find another solution. Having a good relationship with your dermatologist is essential.” The treatment of psoriasis is not always simple. “When the disease is at its worst it can feel like an extra 20-pound weight on your shoulders,” says Allan, “and look like a snake with shedding skin.” Allan has felt the sting of missing out on swimming with his children and any social events involving pools or hot tubs. He has experienced stares. But thanks to a biologic, Allan’s psoriasis is currently under control. When opportunity knocks? Like other Skin Warriors, Allan has turned his disease into an opportunity to help others. For seven years, Allan has volunteered his time as a CSPA Board Member (and now Past President). For more than six years, he represented patients on a federal government health research funding agency advisory board, the Institute of Musculoskeletal Health and Arthritis (IMHA; part of the Canadian Institutes of Health Research). Areas of research for the IMHA include bone, muscle, musculoskeletal rehabilitation, oral health and skin. In addition, Allan has been a key figure in speaking to the public and media about psoriasis on television, radio and in print. “Working with others has certainly helped me to accept my skin disease,” says Allan. “The truth is that because of my skin disease and involvement in a variety of activities, my life has actually been enhanced. I have met great people as the result of my condition. These people are not only other skin patients, but also those individuals who have devoted their lives to helping to improve the lives of skin patients.” About Jonathan Jonathan describes epidermolysis bullosa (EB) using the metaphor of grass and roots. “If there are no roots to connect the grass to the earth then you can peel it off,” he says. “For us, it’s like the roots of our skin are missing.” In people with EB, the protein that connects the two layers of skin is missing, making the skin fragile. The slightest contact can cause painful sores. Research into EB is not widespread, mainly because most people have no idea the disease exists. “When we go to a hospital, very rarely do we hear a doctor say ‘Oh yes, I know this condition,’” says Jonathan. Luckily, he is treated by a multidisciplinary team at the Hospital for Sick Kids in Toronto, about five hours from his home. The management of Jonathan’s EB primarily involves keeping the condition under control. Most of Jonathan’s body is covered in bandages, which must be changed daily. The condition affects almost all aspects of his life. “Walking or sitting down can hurt a lot,” he tells us. “I have to be very cautious. A regular day, for me, is pretty complicated. When I wake up, brushing my teeth and getting dressed can be challenging. And I can’t do it by myself so my parents help me.” After the morning rituals, Jonathan heads to school. “At school I do everything pretty normally. I’m in regular classes. The only difference is I have an aide who helps me with stuff like opening my plastic bags. I can’t do gym. I stay back and watch. Then when we come home, we do dressings for two and a half hours.” A warrior is born Speaking to Jonathan, several things stand out: He is bright, confident and articulate. Calling himself an “EB warrior”, he talks freely about his condition so that people might understand the disease. He has met others with EB on only three occasions, and none his age. Jonathan and his family have been supported by DEBRA, an organization that aims to help families affected by EB and raise awareness of the condition. In 2012, Jonathan was chosen to attend the DEBRA conference—a life-changing experience. “When I went,” he says, “it was the first time I’d met people who understand what’s going on with me. That’s when I became DEBRA Canada’s young ambassador. I’m now really motivated and want to help the cause.” In closing, what does Jonathan wants people to know? “We’re not that different from you,” he says. “The only difference is physical. Up here [he points to his head] we are the same. EB is a very tough disease; it’s very painful and requires a lot of patience. I’d like people to know that we are here and we would like some help.”