Category Archives: HAE Blog
You may have recently received a French version of our HAE Canada Patient/Caregiver Survey. This survey is the same one that was sent to you in English a few weeks ago. Information regarding the French survey was automatically sent out to all HAE Canada members, as was the English version. If you do not speak French, or have already completed the English survey, you can disregard the email.
Angiœdème héréditaire (AOH) Canada recueille des renseignements auprès des Canadiens atteints d’AOH afin de mieux comprendre ce que signifie que de vivre avec l’AOH au Canada. Les données proviendront d’adultes âgés de 18 ans et plus, d’aidants naturels d’enfants/adolescents/jeunes adultes ainsi que d’aidants naturels d’adultes non autonomes.
Les renseignements recueillis seront utilisés uniquement à des fins de recherche et de défense des intérêts. Il est très important pour AOH Canada de comprendre les symptômes et les besoins des patients, ainsi que leur utilisation des produits thérapeutiques, et ce, afin de continuer à promouvoir un meilleur accès à des thérapies et des traitements sûrs et efficaces pour les Canadiens aux prises avec l’AOH, tout en conservant leur accès aux traitements actuels.
Adultes âgés de 18 ans et plus : veuillez cliquer ici pour accéder à votre sondage.
Aidants naturels d’enfants/adolescents/jeunes adultes : veuillez cliquer ici pour accéder à votre sondage.
Aidants naturels d’adultes non autonomes : veuillez cliquer ici pour accéder à votre sondage.
Veuillez répondre au sondage avant le 24 Septembre
N’hésitez pas à partager ce sondage avec vos amis, les membres de votre famille et vos collègues qui sont atteints d’AOH. AOH Canada vous remercie de l’intérêt que vous portez à notre recherche ainsi que de votre appui continu.
L’équipe d’AOH Canada
The French survey is currently being tested and should be available next week.
Providing HAE Canada with this vital data will help us in understanding our membership and your needs.
A few points of clarification:
Acquired Angioedema patients should complete the survey by answering the first question as HAE Patient, then the second question as Acquired Angioedema.
Asymptomatic patients, who have a HAE diagnosis but are not having attacks or symptoms, should complete the survey
HAE Patients who are not receiving any treatment for their HAE, please still complete this survey
For those who were on vacation when initial survey was sent out, please take the time and complete the survey
For new members who have recently joined our HAE Canada family, please take the time to complete the survey
We remind our Caregivers/Family Members to complete the Caregiver Adult Survey portion of the survey to provide us your perspective on how living with family members with HAE has affected you and your household.
It is imperative our Caregivers complete the Caregiver Child/Youth Survey. You will be providing us with the necessary data to ensure we have an accurate picture of the children and youth, 18 and under, here in Canada…you are their voices. In order for us to advocate for our children and our youth, to ensure them a better future and quality of life, we need to know numbers and regions of children and youth with HAE within our country.
Things have progressed greatly for HAE in the past few years and we at HAE Canada want to ensure we are abreast of the needs of our membership, enabling us at HAE Canada to provide ongoing support and advocacy now and in the future.
By Paige Gunderson
Though it was a short trip it was a very fulfilling trip to Germany. My sister Makayla Gunderson and myself Paige Gunderson had gotten a chance to go on. We left at 12:20am on the 3rd of August after a bit of a ticket mixup, that was thankfully all worked out by Henrik and Nevena. Then we were off to Heathrow, London then right on to Frankfurt, Germany. The final stop on our long journey and where we would be calling home for the next 3 days. From the airport we went straight to dinner once at the hotel, where we received a Youngsters hoodie and backpack. They are quite nice! This where we met Henrik Balle Boysen, the reason the summer camp was possible and the only reason we got there in the first place. Big thank you to him. After a delicious meal we had our first introduction meeting where we found out how many people were there and how many countries they were all from. 23 to be exact! For me this was a big eye opener. Before this trip all the people I knew with HAE was my mum, my sister, Anne Rowe and I knew of a couple HAE Canada committee members with HAE, though none my age. To see a room full of people all around my age going through the same thing was crazy. That’s when HAE international really sunk in for me.
The start of day 2 was when it all started, we started talking about our Family Tree homework where we had to map out who in our family has HAE. By looking into our family trees we figured out at least 150 different people with just the camps family trees alone that have HAE. Which was crazy to think about how not only are all the young people with HAE in the room, they had family either in Germany with them or at home to broaden our own not so little family. After that we talked about the importance of diagnosis which for my family is very very important because it took my mum 46yrs, my sister 18yrs, and myself 23yrs to be diagnosed. Before that it was a lot of doctors guessing it was this or that or just straight out brushing us under the rug because they didn’t know the answer or didn’t even have the desire to search deeper for an answer. Then after lunch was a really fun experience, we got split into groups and had to create “What HAE means to me?” posters. That was one of my favourite parts of the entire trip, the artsy fartsy part. But also hearing the others ideas about what it means to them. How many feelings overlapped and how there was new ones not everyone thought about but we all collectively felt. Basically we came to the conclusion by having this new family we were creating we were not alone.
A walk and talk was that evenings social time where we got to listen and ask others about their experiences with HAE and what medications they are on to treat it. Plus we got to see some of the forest area behind our hotel which was cool to compare the trees in Germany to the trees we have here in Canada.
The next morning we got a face2face with 2 different doctors to talk to us about HAE and answer any questions we may have. One of the doctors explained what happens in our bodies when we have an attack on a cellular level which to be honest was extremely enlightening to have the scientific facts behind an attack for what we just view as swollen or pain. Then that afternoon we got to tour around Frankfurt a bit getting caught in a short rain storm to add to the memories we won’t forget from this trip. Leaving our last kick at the can being a disco dance with everyone. Letting our hair down knowing we wouldn’t be judged if we danced funny or had to sit down so not to encourage an attack. In that moment with all of us in the room together, our new family, having HAE became normal and safe. We are not alone.
But over all I think what I took away from this camp the most was learning how different the counties are with accessibility to treatments. Such as here in Canada we have quite a few options for treatments where some counties have nothing or only one. That is what we together as an HAE family need to change. All the friends I’ve made on this trip has changed my thinking towards HAE and I’m forever grateful I was one of the many youngsters picked to experience this trip.
By Makayla Gunderson
I was over the moon excited when I found out that we got accepted to go to Frankfurt Germany for the HAEi Youngsters Summer Camp. To be honest, I was basically just excited to go to Germany because I had never been there before and it was a free trip. When my sister Paige and I got to the airport though, I was sure we were not going to be able to go. The travel agent that booked our flights sent us the wrong tickets and we were supposed to fly out earlier that day. Luckily the flight information we were given, there was room on those flights and by the hard work of our Mom, Nevena and Henrik they got all of it worked out and paid for just before the boarding started here in Halifax. I was sure we were not going to make is and was so grateful when we were on the plane that everything had worked out. The day of flying was long and both our flights were delayed so we got in later then we expected but everything went well and were treated very well.
When we finally got to the hotel and sat down for the introduction meeting with everyone there in that room my mind shifted from free trip to Germany to wow there are loads of people our age with HAE. I was now really excited to meet everyone. After our meeting, all the parents and Committee members left and all of us pushed the tables together so we could sit around them and talk. We all introduced ourselves with our names, age, and country we are from.
Seeing all of these people around my age that either have HAE or a family member has HAE was so eye opening. Besides my sister, Mom and me I only know of one other lady Ann, and I have not even met her yet since I go away for college. Knowing that all these people could have it or have it was a bit calming in a way. The next day we all got together and talked about what HAE means to us and we all basically said the same thing to the questions. That is nice to know we are not alone and now there is always someone to talk to about our HAE to someone our age. That we feel like most of the time we know more then the doctors do. And that being there in the room with everyone we felt normal. We don’t have to constantly explain ourselves we can just be normal because everyone just knows what we’re going through.
On the last day we got to talk to two HAE specialists and ask them questions. I had never been sat down and formally told what actually happens when our body swells. One of the doctors explained to us the process of what happens when we get an attack. It was so fascinating to hear and know how the medication works with our body when we have an attack and how to prevent one from happening. I also learnt that many countries don’t have anything for their patients and if they have anything it’s very little or only given to them in the hospital on serious attacks. I learnt how very different every country is when it comes to medicine accessible to us and that this needs to change and that every country should have more options for medicines accessible to everyone.
I am so grateful that I was able to go on this trip because I learnt so much from it and got to meet so many amazing people that I can talk to whenever I need it. I would love to go again for the next camp to see everyone and learn so much more. It is so different now knowing that I am not alone at my age going through this.
Hereditary Angioedema (HAE) Canada is gathering information from Canadians living with HAE to better understand what it is like to live with HAE in Canada. Data will be collected from adults 18yrs and older, caregivers of children/youth, and caregivers of adult dependents.
The information gathered will be used for research and advocacy purposes only. It is very important for HAE Canada to understand patient product use, symptoms and needs so we may continue to advocate for improved access to safe and effective therapies and treatments for Canadians living with HAE, as well as retain access to current treatments.
Adults 18yrs and older please click here to access your survey.
Caregiver of child/youth please click here to access your survey.
Caregivers of adult dependents please click here to access your survey.
Please complete the survey before August 16, 2017.
A French version of this survey will be available at a later date.
Feel free to share with friends, family and colleagues who are affected by HAE. HAE Canada thanks you for your interest in our research and for your continued support.
The HAE Canada Team
CIPO BC and HAE Canada invite you to
A Patient Education Event
with featured speakers
Dr. Amin Kanani,
Canadian Blood Services and expert speakers on accessing insurance and disability tax
Saturday, May 27, 2017
10:00am – 3:00pm
Registration begins at 9:00am.
The Firefighters Hall, Burnaby
Please join us for a delightful and informative day with expert speakers and networking workshops. Come, learn, and get involved!
Please mention any dietary restrictions in your RSVP.
Lunch will be at no cost thanks to the generous support of our sponsors: