We asked members of the HAEA community, as well as HAEA staff members, to reflect on what hae day :-) means to them, as well as their best experience or memory with hae day :-). Take the time this month to appreciate how far we have come as a community!
hae day :-) is important to me because it gives visibility and recognition to those of us who have this condition! The more we share our HAE experiences, the more we can spread awareness in our communities and beyond. As someone who is the only person in my family with HAE, having a special day to see our community of advocates come together is truly special. Happy hae day :-)! - Kayla
For me, hae day :-) represents how much my life has changed due to HAE therapies. As a person who has HAE, I didn’t expect to feel as bad as I did when my seven-year-old son woke up with facial swelling from his first HAE attack.
I was devastated and felt as if I would spend the rest of my life worrying about his well-being. Then, a few years ago, we both started taking preventative HAE medication and our lives have improved significantly. We now live without the constant fear of an HAE attack coming on. For that, I am forever grateful. - Nicole
hae day :-) is a time to reflect back on how far I have come in my diagnosis. When I was first diagnosed more than 10 years ago, I had debilitating attacks almost weekly and had little to no treatment options. I was unable to live my life without the constant fear and anxiety of an HAE attack, and was very restrictive in my activities.
I am now able to live a life free of attacks and am confident to travel, exercise, and do the things that I love to do, which includes long walks with my dog, Motley! - Hannah
hae day :-) gives those who have HAE, their families, caregivers, medical professionals, and others a chance to join together to share stories, learn from one another, and raise HAE awareness. It is a day that unites the community, brings attention to our rare condition, and it’s a day that reminds us that we are truly stronger together.
Each year on hae day :-) I like to share this short documentary that was produced by PBS highlighting me and my family’s story. I encourage you to take a few minutes to watch using the link here: https://youtu.be/JOAtZ2IlC2c - Lisa
hae day :-) means that awareness of a very rare disease is better understood by emergency room doctors, and all doctors in general, which helps patients get better care. - Janet
For people who have rare diseases, it’s not uncommon to feel isolated or lack community. This is also true for people who experience Hereditary Angioedema, but fortunately there’s a fantastic community that comes with being an HAE patient if you choose to tap into it. I didn’t know there was an hae day :-) before becoming involved with the HAEA, and it is so affirming to know that there is a day we recognize as a tribute to our trials and tribulations as rare disease patients.
It’s also an amazing opportunity to educate your community who may not know of/have access to information regarding our disease and its treatment. Every year, as HAE Day approaches,
I am reminded of how far our community has come but also acknowledge how far we have to go. - Kobe
When I am asked what it is like to have Hereditary Angioedema, I always respond “before therapy or after therapy” because it is like two different worlds. Before my HAE therapy, I had to take out my calendar to guess when my attacks were going to be to be sure to avoid plans on those days.
Now, on therapy, I have normalcy and a great quality of life. I am so proud to be part or our HAE community coming together and participating in the various clinical trials in order for HAE therapy choices to happen!
- Sally
To me, hae day :-) is a great day to bring the community together. Having such a rare disorder can feel super isolating at times, so having a day where the whole community comes together can feel really good. It is nice to have a group of people who can really understand what you’re going through.
It is also a great day to advocate to my friends who don’t have HAE about what HAE is and how it affects me. I’ve found that people are always super interested in learning more about my disorder, and hae day :-) gives me a great opportunity to bring it up and talk about it. - Nathan
hae day :-) to me is an opportunity to be the best caretaker I can be. Whether it’s putting in an extra hand to do a little more than usual around the house, or trying to do my best to listen and help my partner manage her anxiety as to not cause an attack.
hae day :-) allows me to have an opportunity to reflect on myself and what I can do better to help my partner navigate this difficult part of her life. - Cooper
hae day :-) means community awareness. The passion of the HAE community in raising Hereditary Angioedema (HAE) is what drives great successes.
El día del aeh :-) significa generar conciencia comunitaria. La pasión de la comunidad con AEH por generar conciencia sobre el Angioedema Hereditario (AEH) es lo que impulsa grandes éxitos. - Ianice
hae day :-) means a lot to us as it is a reminder of how far we have come. When my son, Luke, was first diagnosed, we felt lost and uncertain as to how to proceed. Being part of the HAEA has been a great source of comfort knowing there are many resources available to help us navigate life with HAE.
There is a strong bond between community members and hae day :-) and is a great way to raise awareness, share our stories, and continue to advocate for others who need our help along the way. - Mandy
hae day :-) means celebrating my daughter and the special qualities that make her the strongest person I know. She is a warrior that works tirelessly for others, like her, with this special quality. It means celebrating the strides towards disease management for all. Each HAE patient is unique and we celebrate those unique qualities and bring awareness to each patient on this day, and everyday.
The HAEA team is working tirelessly with patients, caregivers, physicians, and pharmaceutical companies for continual strides in treatment options and therapies for HAE patients and their families.
Here is to HOPE for the very near future that all patients can access treatment that is best suited for their attacks and peace of mind to all struggling with this rare disease. - Jodi
For me, hae day :-) is all about celebrating community. I'm the only person in my family to have HAE, so for a long time I felt really isolated. Luckily, my mom heard that the National Organization for Rare Disorders (NORD) was having a conference in Washington D.C. in 2000 which we were able to attend, and it was the first time I met other HAE patients.
Growing up before social media existed made it difficult to easily reach out to other HAE patients, so the in-person community events helped me feel connected to others who were going through the same challenges I was. I'm so thankful to be a part of this community that has pushed for progress, and look forward to seeing how we all grow in the future! - Adina
One of my favorite things to witness is the HAE community get together from all around the world to enjoy this special day. Given the distance between us, I believe the HAE community does an amazing job of demonstrating how well we have all come together and developed unique ties with one another.
For me, seeing the community gather from all over the world to celebrate this unique day known as hae day :-) on their own is one of my favorite things to see. I think the HAE community does an outstanding job showing how well we have all united and created special bonds with each other given the distance between us. This day stands out to me because it gives me the chance to meet with patients and caregivers who have gone through similar experiences.
I also think it gives me the chance to learn through their experiences. This amazing hae day :-) offers me the reminder and sense that I am not alone and that I am a member of this beautiful community that understands me. It also enables me to reflect on how far I have come since I first felt alone and misunderstood because of the rarity and complexity of Hereditary Angioedema. Most importantly, hae day :-) is an important reminder to me as to why continuing to advocate and educate others about HAE may be beneficial in improving HAE patient's diagnosis, care, and quality of life. - Jasmeen
hae day :-) to me means awareness, advocacy and support. Having a day dedicated specifically to Hereditary Angioedema (HAE) helps raise awareness about the disease to people who may never hear about it otherwise. hae day :-) also is an amazing advocacy tool as people with HAE around the nation gather whether in person or virtually to share their unique stories.
Besides raising awareness and being an amazing advocacy tool, hae day :-) also demonstrates just how supportive the HAE community is. Knowing that there are other people out there who have what I have and may have been through what I’ve been through makes me feel extremely supported and never alone in my unique HAE journey. - Karissa
hae day :-) is a special day to me. This is a day when our HAE community stands strong together to spread awareness and let the world know who we are. The more awareness we create, the better care the HAE community receives.
Each year, our family submits a float in our local Cincinnati Reds' Opening Day Parade with hae day :-) banners. The banners can be seen by over 100,000 parade watchers! - Mike
To me, hae day :-) means being proud to be someone with HAE. It’s amazing to see how far I’ve come since my diagnosis ten years ago. This photo was taken when I was in the hospital for a week after my port surgery back in 2014.
Looking back on this photo, I never thought I would be where I am now. I love being able to celebrate the progress I’ve made each year on hae day :-) - Jess
To me, hae day :-) is a celebration of the incredible community we’re in. Over the years I’ve spent in the HAE Community, I’ve made some of my closest friendships and had so many once in a lifetime experiences.
hae day :-) is a time to celebrate the progress we’ve made while also taking the time to tell the world how they can help us make even more progress.
My HAE family is comprised of the strongest, kindest, and most headstrong people I know and I love having a day dedicated to celebrating them! - Ally
To me, hae day :-) is a reminder to think about all my strong friends and family from the HAE community. It's a day to celebrate my sister and how far she has come since her diagnosis! - Eliana
As a caregiver, hae day :-) represents an annual opportunity for myself and other caregivers to support the HAE community by raising awareness. My younger sister, Lillian, has HAE and constantly serves as a role model to my family and I everyday.
Lillian’s strength and perseverance through her HAE journey has been very inspiring to me, and has encouraged me to use my voice to advocate for Hereditary Angioedema. hae day :-) allows our community to come together and shows that it is possible to make a difference! - Ava
To me, hae day :-) represents community and advocacy. As a young person with HAE, I always try to find little moments I can tell others about HAE. But let’s be honest… it can be super hard sometimes.
With all the resources given to us by the wonderful HAE Association, we are free to all come together as one and share our personal stories to raise awareness! - Carlie
