Rare Disease Awareness Day – February 28

Burlington Lifestyle recently chatted with Lisette Kingo, founder of The Angel Project, who raises funds and awareness through the Angel Tournament for many of the most vulnerable members of our communities – complex care patients living in hospitals.

Now, however, Lisette is now on a personal mission – to bring awareness and support to those in our community who live with a rare disease. This isn’t an easy or comfortable story – both Lisette and her daughter live with a rare disease for which there isn’t a cure. Please take the time to read our interview. It’s long, but important. You’ll be informed, educated, and inspired.

You’ve got some exciting news to share. Please tell Burlington Lifestyle readers what it is!

On February 20th at City Hall, Mayor Rick Goldring presented a proclamation declaring February 28th Rare Disease Awareness Day here in Burlington. With that comes a promise to commit the City of Burlington to serve all those in our community, including those who suffer from rare disorders.

How did this special proclamation come about?

With everything that is lacking for those of us with a rare disorder, I was very surprised at the warm response from our Mayor. A mutual friend sent an email of introduction stating I had something I wished to speak with the Mayor about. I received a response and a time where we could speak with in a week. I realize our officials are very busy so I tried to get to the point without getting emotional or too personal.

I feel that Burlington has fallen behind in many ways in the treatment of those with rare disease. I presented our Mayor with facts and stats from our community and we got the ball rolling. The proclamation is only a start. It is a recognition of those families and people fighting who feel that they have not had a voice. It is a platform from where we will start, hopefully a solid foundation on which we can build awareness, recognition and research.

What exactly is a rare disease?

A rare disease is a disease or disorder that only affects a small percentage of the population, sometimes also referred to as an orphan disease. In Canada, it is defined as a disease affecting less than 1 in 2,000. There are approximately 6,000 rare diseases. You may have heard in the news lately about the lack of funding for orphan drugs, for example; because only a small percentage of the population would benefit from the drug, research is lacking (because of course the market is smaller – hence less profits).

Canada is one of the only developed countries in the world to NOT have an orphan disease research incentive and in addition, Canada falls over 6 years behind in making drugs available to patients with RD, and when they finally do, only about 60% of such drugs ever make it to Canada at all. This is one of those things that we find extremely difficult to believe about our wonderful country which is supposed to look after everyone. Yet there are entire groups of people left completely to fend for themselves.

Please share some statistics about rare diseases.

The statistics are staggering. 1 in 12 Canadians live with Rare Disease (in all likelihood that number is higher, due to lack of diagnosis and misdiagnosis) and 1 in 10 people worldwide. 30% of those diagnosed will not live to see their 5th birthday. 80% will not make it to see their 10th birthday. One of the worst stats is that teen suicide rate amongst Canadian teens diagnosed with RD are more than 326% higher than the average teen. The suffering is immense and there is almost nowhere to turn for help.

You are a champion in our community for those who others have forgotten. Why is this cause so important to you?

Ever since I was a little girl, I have seen people doing things to hurt one another, but that wasn’t what got to me. What really got to me were the people standing by who did nothing. For me there is no excuse for that. Especially those who are vulnerable. I feel society has become such an egocentric environment, and things are valued much more than humans.

Most of you know me through The Angel Project where I try to be the voice for those who truly have none. The ones who have suffered medical tragedies, but even worse, in their time of need, they were abandoned by everyone who was supposed to love them, the ones who were supposed to see them through tragedies. It has never been pretty work; I worked behind the scenes for years before I realized that their stories had to be heard. I was always met with a lot of resistance, surprisingly even from my friends. I never knew that one day I would be a patient instead of the voice for a patient.

I became ill in 2013. Extremely ill. I still to this day cannot comprehend how I survived these last few years. More so, I am not sure how my family has managed. We had a lot of friends who helped us out in the beginning, driving the kids to their after school activities or dropping off dinner, but as time went on and I was still ill, people began to fade. The kids went to school without lunch or to bed without dinner. A few times they slept alone in the house while I was in ICU and their dad slept on the floor in the ICU. I would be home for a day and people would say “oh, you look so good.” People were whispering, “oh, she is fine.” Because no one understood – and how could they, the doctors didn’t understand either.

When my surgeries began, I became a medical marvel. We were told that my insides were like “tissue paper” – wherever the trauma surgeon laid a finger, I would bleed. I had 8 surgeries, each with more complications than the next. Then came the infections, which always turned in to sepsis. Our family is on high alert; with every chill or pain comes the question, is this it? I was diagnosed with Ehlers Danlos syndrome with a particular focus on internal bleeding, Postural Orthostatic tachycardia syndrome, and Mast Cell Activation Disorder. It is a mouthful, and none of the above are words I had ever heard before.

Today my life is very different than what it used to be. One moment I can attend a hockey game and an hour later I can be on life support in the ICU. We literally do not know one minute to the next. I take close to 50 pills in a day, and not one of those pills will make my condition any better. They simply manage some of the symptoms. I also have a port surgically placed in my chest. I have received more blood transfusions that I can count and every third Thursday I sit at the Boris Clinic in Hamilton and receive intravenous immune globulin. Through this I continue to fight for my complex care patients.

But then came the day when I received a call that my daughter had fainted at school, and it wasn’t the first time. We realized she may have inherited my rare disease and I realized I can no longer be a bystander in our own life – I had to be HER champion, too. I had to be my daughter’s voice so that she would not become a statistic. No matter how tired or ill I was, there was no one out there who would fight for her.

What does it mean to have a day dedicated to rare disease awareness?

It means that perhaps one less person will say “but, you look good.” It means that there is a day where our city has to stop and recognize all of us still fighting every day and remember all of those who lost their fight. It is a day where we can give a little bit of hope to the incurable. With awareness comes hope and with hope comes life.

What would someone with a rare disease want others to know?

I can’t speak for others with rare disease, I can only speak for me and I would want others to know that life is precious. Don’t take it for granted. If you are healthy, treasure it. I want others to know that even though I often cancel plans, don’t stop asking. Just because I look good to you doesn’t mean I feel that way. I often feel like I am looking at the world through a window now. I can’t quite participate anymore; I can fake it for a little while but then I pay dearly for it in pain. It would be nice to at least be able to open that window, feel a little bit more connected again…even when I am in pain. I want to breathe the air you breathe again instead of hiding away, not knowing what to say. I like it when a friend says, “hey, I read up about your condition, I learned about it.”

How can the community be of support?

Most often it is not about the grand gestures but the small things. A note on my door. A phone call, etc. I do feel like we as a community can do so much more. In the midst of our chaos, our closest friends had to deal with cancer. It was a hot mess between our families. We did everything we could to support one another. There were so many wonderful support groups for cancer patients, and there were programs and drive assists to chemo. It was wonderful to see the community rally behind such an awful disease.

But for us, there was nothing. I was not allowed to drive due to my heart, but I had to get to the hospital several days a week, etc. I wish that the community would rally around all who were ill, never mind the name of the disease. As a community, we need to check in on each other more. Stop the “how are you’s” without meaning and start the “I care and I want to know if I can help somehow.”

What does this mean for those who will one day be diagnosed with a rare disease in our community?

I don’t know. That is the honest answer. What I hope it means is that this proclamation will highlight the need for awareness and understanding of rare disease. According to the World Health Organization, RD is responsible for up to 60% of deaths worldwide; perhaps some of these statistics will bring to light the need for us to do more. At the very least I know that with this proclamation I am being the voice for so many who simply feel no hope anymore, and most of all, it is paving the way for a future with more research and perhaps, one day, a cure.

Anything else you’d like to add?

If you want to be truly happy, focus on the good things in your life. The gifts of friendship, family, love. Those are the things that matter. Do the little things that make you smile. Take time to go for a walk in nature. Call your parents. Put your phone away and throw the ball with your kids. When you see something that is wrong, stand up to it. Have the courage to say NO. Whenever you can, please donate blood. The life you save could be yours. And most importantly, don’t ever worry about what other people think of you….you just live your life in such a way that when you lay your head down for the night, if you never wake again, you will know that you lived a happy, kind life.

*Lisette will be meeting with staff at Joseph Brant Hospital on February 28 to help educate about treating patients with Rare Disease.

*On February 28, wear jeans to “care for rare!” (It’s in your genes/jeans).

Thank you for reading. Please take the time today to remember and encourage those around you who may be struggling, often silently. And be sure to take Lisette’s advice and focus on the good in your life!

Learn more about The Angel Project here.

Learn more about donating blood here.

Learn more about CORD (Canadian Organization for Rare Disorders) here.

About the Author Teresa Baerg

Teresa Baerg is a writer, editor and self-confessed word-nerd who loves telling a good story. She is proud to call Burlington home for over a decade. She is passionate about her family, sunshine and palm trees, growing veggies, running and cycling, good books, good food and good coffee. And football. Twitter: @teresabaerg Instagram: @teresabaerg Website: teresakbaerg.com