3 posts tagged “helping”

“It just makes sense to give back”: How PatientsLikeMe employees volunteered their time this year

Posted 9 months ago by

Volunteering is a big part of the culture at PatientsLikeMe. Inspired by PatientsLikeMe members, who have made our online community a place to find support and answers about health, we do our best to give something back to our local community, too. This year, many of our staff members pitched in and gave their time to organizations all over the greater Boston area. Here’s what we’ve been up to this year…

  • 50 PLMers (that’s what we like to call ourselves) volunteered during PatientsLikeMe’s service month in November
  • Those individuals volunteered a total of 260 hours
  • …and supported 18 different organizations in the greater Boston area

Check out some of the places we volunteered our time this year, and see these PLMers in action…

PatientsLikeMe staff members volunteer at Rosie’s Rosie’s Place

Rosie’s Place is a women’s shelter in Boston that was created to service poor and homeless women. They not only provide shelter, but also support 12,000 women a year with a wide range of services including housing and education.

Tori, Katie, Kim and Rebecca volunteer at Community Servings

Community Servings is a not-for-profit food and nutrition program whose mission is to provide services throughout Massachusetts to individuals and families living with critical and chronic illnesses. They provide home-delivered meals and nutrition services that are medically-tailored to the individuals receiving them, based on their condition. Right now, they deliver to 20 cities and towns across Massachusetts, and are beginning a pilot program in Rhode Island.

Jeremy, George, Jenni and Amber volunteer at Healthcare for the Homeless

Boston Healthcare for the Homeless program supports more than 12,000 homeless men, women and children, and provides access to comprehensive healthcare, from preventive dental care to cancer treatment.

Extending our mission from online to offline

Maria Lowe, Co-chair of the PatientsLikeMe Social and Volunteer Committee, helped organize and coordinate these volunteer efforts in 2017. “I think it’s so important to take time to think about how others around us might not have some of the things we take for granted,” she said. “To me, it just makes sense to give back in whatever ways that I can.” In fostering a culture of volunteerism at PatientsLikeMe, Maria says it fits with our core message. “We’re all about putting patients first and we have our “give something, get something” philosophy, so I think giving back to our local community however we can is just a natural extension of that.”

Here’s to another year of building stronger communities, together.

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Finding answers from the community: Members helping members

Posted 9 months ago by

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

Member shumburd, who is living with bipolar, recently shared 5 strategies that help her cope with her symptoms in the mental health forum. One way she “fakes it ’til she makes it” is writing it down:

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.

Who’s helped you during a tough time? Are you a PatientsLikeMe member? Share about it and say thank you by tagging them in your newsfeed.

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