Having questions about how to deal with HAE after receiving the diagnosis is only natural. So, to those just recently diagnosed with HAE, I’ve written out a short list of questions I’m frequently asked and how I answer them based on my own experiences. I like to think it might help someone on a similar journey.
Q: What do I do now?
A: I was lucky to get a diagnosis at a young age, because of my family history. While I didn’t choose it, getting my diagnosis meant I could take the next step. And, for me, the next step was talking with an immunologist about treatment. The great news is, nowadays, in my experience interacting with doctors, I’ve found that they are much more aware of HAE and its treatments.
Q: Why do I feel like no one understands me?
A: HAE is a rare disease, which means not many people know about it. Luckily, it seems to me that HAE is becoming more and more understood. There are resources on social media and at programs, like the ones sponsored by Shire. I personally have been able to connect and create lasting bonds with the people who attend. The HAEA is another great resource to learn about networking opportunities.
Q: How can I help my family understand my HAE?
A: In my opinion, I think it can be beneficial for spouses or other family members to attend functions where they can learn about HAE and meet other people dealing with similar issues.
Q: Are there treatments for HAE?
A: Yes. In the past decade, new treatments have become available to us. By working with my doctor, I developed a treatment plan that works for me.
Q: How can I afford treatments?
A: Again, good news—there are programs available to help people having difficulty paying for their medicines. In my case, OnePath®, Shire’s personalized product support service, was able to help me with my questions about paying for my treatment. When I first started treatment, I was assigned a Case Manager, who helped me work with the insurance company to qualify for my treatment. OnePath can also provide information about its own co-pay program.
So, if you're new to the HAE world, I welcome you and wish you the best of luck.
When you were first diagnosed, what were some of your main questions? Leave a comment below!
The journey to an HAE diagnosis differs for everyone. Hear from Shire's Patient Ambassadors at an event near you. Click here for more information.