Before receiving my diagnosis of hereditary angioedema, I was misdiagnosed with a range of different diseases. All the doctors I visited had good intentions; it’s just that at the time, there wasn’t much information on HAE. Consequently, there was a lot we didn’t know. Now that I’m better informed, I feel I would’ve approached some things differently when I was newly diagnosed. If I could go back in time, I’d…
- Seek counseling for my family and myself, because we desperately needed support and to feel like someone was listening to us
- Participate in local or national HAE meetings and read information provided by the Hereditary Angioedema Association. For a long time, I thought I was alone with this disease. Now social media is available, and there is access to others just like me around the clock.
- Listen to my body. I know my body better than anyone else in the world. I know I need to rest if I need to, even if I’m busy. I know it’s important to schedule a break in the day or during the week, and give myself permission to spend some time for myself. In a fast-paced world, that can seem hard. I had to consciously slow my pace down.
- Take a good long look at my lifestyle including work, family, and friends. It’s important for me to take a step back and consider making changes to decrease the stress in my life. I noticed that stress, both internal and external, can sometimes cause an attack.
- Be more aware and proactive for myself and others. There are lots of resources about HAE out in the world today, but there are many people who still don’t know about it. I try to use every encounter as an opportunity to tell others about HAE. I figure, who can spread the word about HAE better than someone who has it?
Ultimately, we are our best advocates. HAE isn’t the easiest disorder to have, but luckily there are people out there on similar journeys with advice to give and tips to provide.
What advice would you give to someone newly diagnosed with HAE? Leave a comment below!
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