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life without lupus is the goal of lupus canada
also known as "the disease with a thousand faces," lupus affects more than one in 1,000 canadians, with women eight times more likely to be diagnosed.
"by raising our voices together, we hope to create a better world for those living with lupus," says leanne mielczarek, the executive director of lupus canada. supplied
according to lupus canada, lupus is a chronic autoimmune disease that manifests in inflammation in one or more parts of the body. symptoms vary from person to person but can include joint pain, extreme fatigue, rash, chest pain, weight gain and headache — which is why it’s referred to as “the disease with a thousand faces.”
it’s also difficult to diagnose, since symptoms can sometimes mimic rheumatoid arthritis and multiple sclerosis. more than one in 1,000 canadians live with lupus, and women are eight times more likely to be affected, usually between the ages of 15 and 45. under and over those ages, the disease, which presents as one of five types — the most common is systemic lupus erythematosus (sle), which targets any tissue or organ in the body — affects both sexes equally.
although it was identified more than 2,000 years ago, there is still no cure for lupus, and its cause is still not fully understood, although heredity and hormones may play a part. leanne mielczarek, executive director, lupus canada, shares some background, as well as why she believes that, with education and awareness, the organization’s goal of “life without lupus” will soon be met.
how did lupus canada come to be?
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we’ve been around for more than 30 years. we are the national organization and our primary focus is on lupus research, advocacy, awareness and education. we’re have a relatively small staff — we only have three full-time people and one part-time person. we’re small but mighty. we get a lot done.
what are the primary objectives of lupus canada?
to support lupus research and advocate for those living with and impacted by lupus. and that takes into consideration caregivers as well — what the impact of caring for someone living with lupus looks like. creating awareness is also important. until we create that awareness for lupus, we’re not going to be successful in the other areas.
there’s also a challenge around diagnosis. at this point, the average time for diagnosis can be up to seven years because of how the disease presents itself and the knowledge of general practitioners about what lupus is. we hope to reduce that time because we can only imagine the impact it’s having on someone’s organs if they’re not getting the proper treatment.
what services does the organization offer?
we have a facebook support group where we provide different programs under the let’s talk lupus umbrella, such as advocacy webinars, disease awareness webinars, and many more. we have a library of those webinars, which help educate and inform people about the disease.
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we also have a scholarship program that gives $2,000 to six students living with lupus to help offset the costs of post-secondary education.
what are some of the challenges facing lupus canada?
funding and policy issues are the two main things. we are not supported by the government, we are fully funded through donors, corporations, sponsorships. this year, we’re advocating for policy change and ensuring there is equitable access to care for all canadians. it’s been 60-plus years [since we’ve seen] treatments that are specific to lupus [clinical trials for new therapeutics are ongoing]. once we start seeing these treatments, we want to make sure that everybody has access, not just those with private insurance.
do you lobby government on these issues?
from all different levels, we’re trying to get in the ear of elected officials so they can understand that this is a real need. but it starts with raising awareness of the disease so that people understand what it is. a lot of times we’re educating those officials so they can talk about lupus with some knowledge. it’s a challenge, but we’re making headway. i’m very excited to see the changes that are happening and dedicated treatments coming through the pipeline.
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what are some of the new treatments in development?
saphnelo from astrazeneca is a new treatment [for sle] that has been approved by health canada [and we’re] waiting for better access through public funding. there are also other treatments in other countries that are not available here in canada. sometimes people are managing their condition on medications like prednisone or corticosteroids, but these have long-term adverse effects, so it’s important to find new treatments that will reduce or eliminate their dosages.
what are some of lupus canada’s current initiatives?
sixty-four landmarks across canada are being illuminated either on may 10, which is world lupus day, or may 19, which is put on purple for lupus day. we have a webinar that we are collaborating on with the arthritis society about the difference between rheumatoid arthritis and lupus, because there is quite a bit of crossover between those two diseases.
we also have the disease of 1000 faces campaign, which is ongoing. we’re collecting photographs and stories of those living with lupus to show the human side of this disease. and throughout the month, we will have videos and testimonials that will be shared through our social media initiatives.
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what are some misconceptions about lupus?
it’s considered an invisible disease because people can look well even though they’re fatigued. but fatigue is much different than being tired. we hear a lot from patients that their family doesn’t understand [and they’re] afraid to share their diagnosis with their employer in case it impacts their career.
do you partner with other organizations around the world to advance research?
yes, we partner with the lupus foundation of america because they have a much larger reach to get messaging out there. we are also a member of the world lupus federation, which is a group of global lupus organizations that we work with to share the message and keep everyone up-to-date with the struggles and successes in other parts of the world.
what do you hope living with lupus will look like in five years?
i would like to see all canadians living with lupus have equitable access to care and treatments and that there are more dedicated treatments available. even though there are treatments, it doesn’t mean that it will work well for everyone. we want to make sure there’s a diversity of treatments for a very diverse disease.
and maybe one day there won’t be a need for an organization like yours?
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absolutely. that’s our main goal: life without lupus. but while we’re working towards that goal, we want to ensure that folks impacted by this disease are living well.
lupus patients can face a lot of different emotions, from frustration to anger to depression, and we want to provide support and resources to help.
living with an invisible disease can be very frustrating. sometimes doctors don’t really listen to their patients, what they’re going through and their symptoms. it’s also [challenging] talking to their families about what they’re going through. by raising our voices together, we hope to create a better world for those living with lupus.
may is lupus awareness month. for more information about lupus and to connect with others, visit lupus canada.
robin roberts is a vancouver-based writer.
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