My Experience with Online Community Groups + HHT: The Good, the Bad and the Ugly (Part 1)



With the prevalence of social media, it is almost impossible not to be connected these days. One of the most popular ways to connect with others is through community support groups, like the ones for HHT on social media sites.

Most of the time, I think these groups are what our HHT community needs. They provide hope, camaraderie and education. Then there are other times when those nice thoughts turn to irritation, education turns to misinformation, and they can stir some controversy.

I have thought a lot about these types of groups and how to best use them because I find real value in them! Cure HHT’s Community Engagement Manger, Ally Clancy, helped me organize my thoughts and gave me some great tips for utilizing our online community.

Here is a 3-part series on how I feel about HHT online community support groups, and some tips for how I have been able to find real connections with others in the HHT community.


Part 1: The GOOD


Friends & Community

One of the best things to come from online support groups is a new group of friends.

Some people really develop genuine and lasting relationships with others they meet in online communities. To be connected with other families affected by HHT gives me (and I’m sure others) a great sense of community. We are all here to help and support one another. It is so nice to share a story and have someone else say they have been through the same thing or to raise a concern and have others support your worries and fears. There is a great sense of community within the HHT world and I am so grateful to be part of it!



One of my other favorite aspects of these groups is the ability to learn from others and to share my own experiences in how to help my family manage HHT.

Don’t get me wrong, I have seen a lot of ‘bad advice’ to some serious problems on community forums in general, and I think it sneaks into the HHT community groups, too.

However, it has been a tremendous help to know that even if a doctor, nurse or other healthcare professional doesn’t know about HHT, there is a group that does and is there for us. I always look to Cure HHT’s resources whenever I hear of a new treatment or tool though, and I don’t try anything to manage my kids’ HHT without consulting a healthcare professional first and foremost who knows about HHT.

There are some things that medical providers not affected by HHT cannot help with in the way our HHT community can. How to best remove blood stains from anything and everything, how to get your small children used to cleaning up bloody noses, and how to explain HHT to new people; these are all things I have asked advice on within the HHT online forums and received excellent answers!


New Resources to Explore

This goes hand-in-hand with advice, as I love seeing new resources shared in the community groups and I’ll admit that I am a repeat offender.

Sometimes people don’t have the time to dig through all the information online to find what they need. However, someone else may have just read a relevant article that could help with your question.

There is no need to reinvent the wheel, so ask away and you’ll find a whole slew of people to point you in the direction you need.


Support and Encouragement

HHT can be scary and overwhelming, and sometimes you walk away from a doctor’s visit with more fear and anxiety than you thought possible. When I am a part of the HHT support groups, that all goes away because of the incredible outpouring of love, support and encouragement.

The HHT community lifts each other up in times of struggle and celebrates each other’s victories in times of triumph. When we received the phone call from our infant son’s genetic counselor saying he tested positive for HHT, I first told our parents then immediately told the online HHT community. I did this because there is no one else that can better relate to the sunken heart feeling I had while on the phone and the simultaneous hope for a healthy future and cure.

I find these groups to be a source of strength, and I find myself lucky to be surrounded by a group of people who care about my family’s future, as I care about theirs!


Check back for Part 2 of this 3 Part Series!


1 Comment

  1. Cristina on October 21, 2018 at 8:00 am

    “Sometimes you walk away from a doctor’s visit with more fear and anxiety than you thought possible. When I am a part of the HHT support groups, that all goes away because of the incredible outpouring of love, support and encouragement.” That’s exactly how I feel. It’s very nice to share your fears and doubts with people who could be passing through the same situation.

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