#togetherapart: Meet Isabel

With the #TogetherApart initiative we have collected fun photos, videos, boomerangs and stories from you of your social distancing days and more – so we can all be #TogetherApart.

Hi – I’m Isabel

I’m 20 years old

I’m a HAE patient

And I live in United States

I hope that HAE patients in the future:
I hope future patients are able to lead happy, full lives without feeling hindered by HAE.

The HAEi Youngsters’ Community is important because:
The HAEi Youngsters' Community shows us how people from all around the world can share similar experiences despite being from very different backgrounds. Even if we're the only Youngster in our own community, the HAEi Youngsters community shows that we're not alone and provides a place to make friendships.

My favorite quote is:
Nothing is impossible, the word itself says, “I’m possible!” –Audrey Hepburn

‘Creating a Path to Better Health’ means:
I stumbled upon this quote when looking for inspiration for favorite quotes: “Do not go where the path may lead; go instead where there is no path and leave a trail” - Ralph Waldo Emerson. The HAEi and adult advocates have already created a trail, now Youngsters can build on that trail and create new ones.

This is my personal story:
I was diagnosed with HAE during my second year of high school after years of various causes being thrown out, ranging from allergies to a burst appendix to tumors. Though I was the first person in my family to be diagnosed, other family members soon followed, solving decades of mysterious 'allergies'. While there are negative aspects of this disease, I try to focus on the positive aspects and how without the diagnosis, I wouldn't have met the mentors and people I call friends today without it. Aside from meeting other people with HAE at conferences, one of my favorite things to come out of having HAE is the skill of self-infusion. In the US, it's optional to learn whether to self-infuse medicine, but I've always been interested in medicine so was excited to learn. While it's a handy skill and crucial for treatment, I've found another use - knowing how to run your own infusion is a great answer for the two truths and a lie party game :)   The first HAEi conference I attended was in Vienna, where I met other international Youngsters for the first time. I attended middle and high school in Costa Rica, so it was incredible to meet other international people with HAE from a variety of backgrounds, and around my age. Now I attend a university where I live in 7 countries over 4 years, so I'm excited to reunite (coronavirus willing:) ) with international friends I've made at conferences, as I travel around the world. This community is what supports and sustains me during bad attacks. Though living with a rare blood disorder can be lonely, seeing and hearing about all the incredible things HAE friends are doing around the world, and knowing people that can relate to what you're going through, is invaluable. If you ever need a friend, I'm here! I'm always excited to meet other Youngsters, so don't hesitate to reach out! I can't wait to become friends :)

#togetherapart – meet us …