Offering words of encouragement. Sharing advice. Just being there to listen. Over the years, we’ve seen countless examples of members supporting each other (did you know there’s more than a 100K posts that mention the word “thank you”?). Check out some of the ways members are stepping up and lending a hand.
Life-changing advice: Get a second opinion
PatientsLikeMe member Theresa (Pipersun) was diagnosed with idiopathic pulmonary fibrosis (IPF) in June 2017. While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. After sharing her concerns in the forum, fellow IPF members stepped in and recommended getting a second opinion. Here’s what happened:
“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”
When her doctor denied an oxygen prescription, Theresa’s fellow members with IPF urged her to seek another opinion. This turned out to be a life-changing, and life-saving decision.
“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant.
Making hard decisions
Member Jandaily, who was diagnosed with ALS in 2015, was struggling with her decision about whether or not to get a feeding tube. Worried about being a burden to her husband, she reached out to the ALS community for advice. Her fellow members helped her look at the decision in a new way by sharing their support, advice and personal experience.
Easing fears and finding hope
When member velcro47, was diagnosed with Parkinson’s disease 8 years ago, his doctor told him he would die of old age before dying from his condition. But he started hearing on the news about people dying from Parkinson’s. Confused and worried about what his future could look like, he headed to the forum for answers.
Within hours, a fellow member who’s been living with Parkinson’s for more than 40 years replied with some comforting words from her own experience.
Sharing a helpful guide to coping
She hopes that by sharing her 5 tips, she can help others navigate the debilitating mental chaos that can come with an episode. Check out the other strategies here.
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