A hereditary angioedema (HAE) diagnosis can be stressful. Because stress can trigger HAE attacks, the faster you get a handle on your condition, the better. This is where solid social support can play a huge role.
Having others to talk to about your concerns is essential for your emotional well-being. Social support groups are also a great place to learn tips about preventing and treating attacks and how to take charge of your HAE symptoms.
If you were recently diagnosed with HAE and looking for social support, here’s a list of places to help you get started.
Nonprofit organizations like the US Hereditary Angioedema Association (HAEA) and its international companion, HAEi, work to raise awareness, fund research, and bring people with HAE together. HAEA offers virtual support groups for these people and their family members. The organization also holds fundraising events throughout the year where you can meet other members of the HAE community.
You can also sign up for the virtual HAEA Café. This gives you access to webinars, breaking news, and live chats with members of the HAE community. Here you can also get advice on dealing with insurance.
A quick search on popular social media sites reveals several groups focused on social support for people with HAE. For example, a search on Facebook brought up this closed support group with over 2,000 members that you can request to join. Another HAE group, the All About HAE Facebook group, and the social media group run by the HAEA are also great ways to connect to other people dealing with HAE.
Patient ambassador programs
Once you decide on a treatment, browse the treatment’s website to find out about available patient support programs. Many pharmaceutical companies have well-organized patient support programs. These can also help connect you to patient ambassadors and community events.
Patient ambassador programs put you in touch with someone who has experience preventing or treating HAE attacks. You can chat with these ambassadors or mentors over the phone or via email. Talk to them about how they manage their symptoms and anything else that concerns you about your new diagnosis.
Children with HAE need to have support from their peers. Summer camps are a great way to give your child something to look forward to. Plus, it gives them the ability to meet other kids who are going through a similar situation.
If you’re willing to travel, the HAEi is offering the opportunity to experience a summer camp in Germany that aims to bring together 100 HAE campers between 12 and 25 years of age. Flights, accommodation, meals, and activities are taken care of by the organization. Participants are only responsible for paying a small registration fee. For more information, see their registration website.
Camp Boggy Creek, located near Orlando, Florida, runs camps all year long for chronically ill children. Their experienced medical staff will make sure that your child is safe. It also aims to make the camp experience as normal as possible. Camp Boggy Creek doesn’t charge anything for your child to attend.
The bottom line
Support means a lot to those living with HAE. Living with a rare disease can be lonely, scary, and frustrating. But you aren’t alone. Talk to your friends and family about your concerns, connect with social media groups and patient ambassadors, and take part in HAE events to get the support you need.