Do You Encourage Other Caregivers To Seek Support?

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    • #29883
      Colleen Steele

      If you are a caregiver and PH forum member, it’s probably because you already know how much you need support from people who understand the disease and the circumstances. But at first, people often feel alone when a rare disease strikes. They can feel blindsided with no idea that there are supportive communities they can join.

      Have you encouraged other caregivers to join the PH News Forums and social media platforms? How do you describe the PH community to others? How has made connections with other patients and caregivers helped you?

      Here is an excellent column on this topic written by Muscular Dystrophy columnist, Prudence Jones.

      Why It’s So Important to Find Your People  

    • #29898
      V.R. Peterson

      Thank you for sharing the article, @colleensteele. I’ve invited my family members to join groups and forums that I’m confident would help them understand my son’s illness. None of them feel the need. If they ever show interest in these groups, I’ll definitely provide the links. Until then, they’ll do them, and I’ll do me.

      • #29908
        Colleen Steele

        @mamabear007 I’m sorry! That is so frustrating. Will they at least read articles or listen if you discuss something you read or heard that you want to share?

        Cullen has never joined an on-line support group and neither has my husband but they do ask questions and express concerns through me. They will also read things that I think they can benefit from. The same has been true for my parents, in-laws and close friends. We have been very lucky in that sense.

        I hope you feel supported here and know that we appreciate all that you share.

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