Welcome HAE Zimbabwe! The 100th member country in HAEi’s global community

“To be able to find the positive and be part of a movement that will now help the future generations is an indescribable feeling,” says Chantelle Manuel, Head of HAE Zimbabwe, responding to joining the HAEi global family. The whole community shares that ‘indescribable feeling’ as Zimbabwe becomes HAEi’s 100th member country.

Tony Castaldo, HAEi’s Chief Executive Officer and Chairman of the Board, tells us: “At a country level, the formation of HAE Zimbabwe is a vital step to reaching more people with HAE and improving lives. At a global level, it’s a landmark for our community. HAEi aims to have a Member Organization for every country on earth. Reaching 100 member countries means we’re more than halfway there already.”

As we celebrate the announcement, Global Perspectives spoke to HAEi’s newest Member Organization, HAE Zimbabwe. We started by asking Chantelle about her journey with HAE and becoming a patient advocate. She told us that despite her first swelling occurring at just 3 years old, she was diagnosed at age 17 when her family left Zimbabwe for South Africa, and a single test confirmed HAE. Her experience growing up with undiagnosed HAE was difficult; nobody knew anything, and she was accused of making up her symptoms. Following diagnosis, she recalls her parents being relieved to know what was wrong, but also that she had been lucky. In the years before diagnosis, she’d avoided any kind of life-threatening throat swell. After diagnosis, she was treated with danazol for more than 12 years until another move, this time to the United Kingdom, changed everything. Chantelle explains: “That’s when the ballgame changed for me. I realized all the other medications that are out there for us that aren’t as harmful as the steroids that I had been taking in Zimbabwe.”

We started our discussion by asking Chantelle about her feelings now that HAE Zimbabwe is part of the HAEi family. She told us: “It’s an exciting feeling to be a part of something so huge. HAE has had a vast, largely negative effect on my life growing up. You just don’t understand why you’re different. You don’t know why you have to suffer.”

“Patricia [Karani, Regional Patient Advocate for Sub Sahara Africa] is a friend. She tried to pull me into being more knowledgeable, but I wasn’t ready then. I had no kids. I wasn’t mature enough to handle it until I had my son. He asked me millions of questions as he also has HAE. It was then that I contacted Patricia. I wanted to make a difference. I wanted to know more. I wanted answers for my son and all the other people with questions. I wanted to be an advocate for people.”

At Global Perspectives, we often hear that the experience of becoming a parent can encourage people to become more active in their advocacy. Chantelle told us that she feels a responsibility. She told us: “It’s our responsibility to help the next generation walk through life not worrying as much as we did growing up.”

Practically, Chantelle sees the progress made and the availability of educational materials as an important tool. She said: “We have access to materials to educate ourselves, to other diagnosed patients, and treating doctors, which can make HAE a less scary condition to live with. One more knowledgeable mind could save a life.”

Chantelle’s enthusiasm for advocacy is very motivating. We asked why she decided to be part of HAEi. Her experience provides a strong reason: “Doctors thought I made up this condition. Some people believed that it was witchcraft, which can happen with an unknown disease. I would like people not to go through the struggles that I had.”

“I have been blessed to have access to medicines in the UK. In Zimbabwe, it’s minimal, and the medicine has side effects and is very expensive. I hope that one day, we can provide access to affordable medication.”

“I am excited to be engulfed in learning, to pass on knowledge, and to be a part of the team that stands for something that means life and death to me and my family. I want to make a change that will change lives, save lives, and make life easier. Starting with HAE, ultimately, I want to change the perception of rare diseases in Zimbabwe. The promise of education materials, information leaflets, and the support of HAEi will help achieve these goals.”

Finally, we asked what advice Chantelle would give other patient advocates, especially those considering starting a group or joining HAEi. Chantelle stressed proactivity: “Just get started. Start slow. Start anywhere. Share ideas, don’t be afraid to ask for help or admit that you don’t understand. And always be willing to learn. You can never know too much because learning never ends.”

Speaking to Chantelle was hugely inspiring, even more so when we realized she was juggling a newborn baby son and managing an HAE swell as we spoke. Her final words perfectly encapsulate the HAEi ethos and the importance of having 100 member countries and counting: “We have to lead with passion. As long as you are driven by passion and you know your cause, you will find a way.”

One more knowledgeable mind could save a life.
– Chantelle Manuel