HAE can be scary and debilitating for those who are living with the disease, but what people don’t always think about is how HAE can affect the people who care for family members and loved ones who have HAE – people just like you.
Caring for someone with a rare disease like HAE can definitely be hard at times, but it can also be an empowering and rewarding experience to make such a difference in the life of someone you care about. The bottom line is that what you do matters, and even the smallest things can have a huge impact. From lending an ear or giving a hug, to helping with daily tasks that may at times be difficult during a swelling attack, you play a very important role!
Seeing people you care about in pain or unable to take care of themselves can be hard to deal with at times, and with rare diseases like HAE, it is easy to feel lost or alone, but it is important to remember that there is help out there. Did you know that there are over 44 million caregivers in the United States? Many of these people are caring for others who have chronic illnesses, just like HAE. There are about 6,000 people in the U.S. who have HAE – many of whom may have moms, dads, partners, spouses, or friends like you helping them navigate day-to-day life.3 This site is designed to help guide and support you as you care for your loved ones with HAE and to show you that no matter what the situation, you are not alone. This site provides resources, advice, and personal stories you need to help you navigate the difficult and important role of being a caregiver. If you take away one thing from this site, know that there are lots of people out there who understand what you’re going through. So check out the site and don’t forget to join the conversation by sharing your stories, experiences, and advice, and let us know what other information or resources you would like to see here.