A Letter to the Newly Diagnosed with HAE

To the newly diagnosed,

First and foremost, you are allowed to feel however you feel about this new diagnosis. It's new. It's scary. And most people, including a lot of doctors, won’t understand. When I received my diagnosis, even though I was already sure I had it, I had the most monumental breakdown I’ve ever had. Tears upon tears. I was sad. I was mad. Sad about my new reality. Mad at my body for not working right.

And then I was frustrated because no one understood. Some people thought my reaction was over the top. Dramatic. Because they didn’t understand how serious this disease is. And I get it. Swelling? How serious could that be? Everybody swells. But you and I both know that this disease is not just normal swelling.

Now, after you've had your freakout that you are entitled to have, I want you to know that you are absolutely not alone. Hereditary Angioedema might be a rare disease, but there are a lot more of us than you would think.

Not only that, but there are quite a few treatment options for Hereditary Angioedema. In fact, we are one of the only rare diseases with as many options as we do have. I’ve only been diagnosed for two years, and they've come out with 3 other treatment options since I was first diagnosed. And they are always working on others.

I’m not going to lie to you, a lot of them involve needles, which was and still is, the hardest part for me. But if I can do it, I know you can because I am the biggest baby ever when it comes to any kind of needle.

Finding the right doctor

My most important piece of advice is about your doctor. I’m assuming since you’ve been diagnosed, that your doctor has probably at least heard of this disease. But I don’t think that's enough. It will be hard, but it's so helpful to you to find a doctor who has a little bit of experience with Hereditary Angioedema, because every single one of us has a different experience in how it affects us and we need someone who can understand that. We need a doctor who:

• Won’t blame every symptom we have on our HAE, but can also spot the small quirks of HAE which can be hard
• Understands the physical aspects of HAE, but also understands the mental toll this disease can take on one
• Is willing to fight for you against insurance companies to get you your medications that you'll need

Finding a good doctor is definitely a challenge, but so important when it comes to this. If I'm being totally honest with you, this diagnosis has done way more to me mentally than it has physically. A good doctor has to be willing to go to bat for you .

Take HAE seriously, but don't let it run your life

Lastly, and here is the key to maintaining your sanity, take your diagnosis seriously BUT don't let it run your life. Trust me when I say this, it is much easier said than done. But you still need and deserve to live your life. Take your preventative medications. Carry your emergency medications. But still go on trips. Still do that thing you've always wanted to do. Keep living your life. Just because your life looks a little different now, doesn’t mean it's not still beautiful and worth living.

Sincerely,

Your friend with Hereditary Angioedema