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Do You Attend Support Groups Near You?
Although I receive my medical care in Boston, I find it so helpful that there is an amazing support group in Rhode Island for those with PH. The group meets once a month on a Saturday and usually there is lunch provided for all that attend, guest speakers covering so many different topics from oxygen to transplant.
This group has been something that I always look forward to attending when I can. They have great research assistants that attend the meeting and sometimes even the doctors will come and talk with the patients.
I love having the one on one interactions and the more personal interactions with the doctors and nurse practitioners. I have benefits from these group sessions so much.
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4 Replies
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Has anyone recently attended an in-person PH Support Group within their community? If so tell us about it and the location in case someone else in the area could benefit from the group.
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Hi @Colleen, I’ve attended PH support groups(SG) in Houston and San Diego. I also participated in the Greater LA Christmas party support group for one year. It was at a park community center, and it was huge in my eyes. It was almost a 2-hour drive for us. They did an incredible job. Dinner and dessert were served, and there was an open bar.
The Houston SG usually helps in a medical building. I only attended a few times in person. But I have attended many others virtually during COVID. Years ago, I was in the SD area and attended a local SG meeting with my late PH PHriend, Cathy. They were having one of the PH specialists talk about new treatments at that time. Again, it was also held in a conference room at the hospital/medical center.
In December, I attended the SD Christmas SG- this one was near the hospital but a few buildings over. The turnout was incredible compared to other SGs I’ve been to. We had a white elephant gift exchange, and it was fun. They also had tons of food and desserts. But everyone went around and introduced themselves and any guests. It was fun, and I think I missed one this past weekend. I had the date down wrong. 🙈
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@jen-cueva wow, it sounds like you have had great experiences at local support groups! Do you happen to remember if there were any parents of PH children at those whether with or without the child?
I think I mentioned this in the past that Brian and I attended one near our home in WA. I think it was in Seattle but can’t remember for certain. We went without Cullen to test the waters and were so glad we didn’t bring him. It was very much adult based and the conversations way too heavy for our 8 year old, recently diagnoses child.
Has anyone ever heard of or attended a local support group for children?
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Hi Greg,
That does sound like a bummer ! Maybe there is a way that you could join the meeting via the computer if they have a camera on a computer and it could be like you’re there but over the internet! In fact, this is something that I think I’m going to bring up for the next meeting in RI especially for those that can’t get there or are in the hospital or too sick to attend face to face. Having some type of interaction is so beneficial! A web chat would be awesome!
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