Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications. AKU is so rare that it’s estimated to only affect… Continue reading “I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn
Tag: PatientsLikeMe
“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of… Continue reading “Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
“Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013
It’s no secret that here at PatientsLikeMe, we think that the voice of the patient — your voice — is the number one way to drive medical advancements. At TEDMED 2013, our very own Sally Okun shared that message on one of the world’s largest stages. She asked the audience a very simple question. “Does… Continue reading “Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013
“The real me” An interview with psoriasis patient and PatientsLikeMe member Maria
Here at PatientsLikeMe, we’re continuing to talk with people who are sharing their health experiences to help raise awareness about their conditions and change medicine for good. For our latest interview, we spoke with Maria who has been living with psoriasis since age 14. Some of you may know her on PatientsLikeMe as pinkdragonrider. She… Continue reading “The real me” An interview with psoriasis patient and PatientsLikeMe member Maria
“It’s all about attitude.” An interview with multiple sclerosis patient and PatientsLikeMe member Alys
Have you met Alys yet? Some of you may know her on PatientsLikeMe as browneyedgirl3. Alys was diagnosed with multiple sclerosis (MS) back in 1987 and has been sharing her own personal health journey on PatientsLikeMe since 2009. She recently took some time to talk to us about her diagnosis, staying optimistic and what inspired… Continue reading “It’s all about attitude.” An interview with multiple sclerosis patient and PatientsLikeMe member Alys
Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
“I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David
Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given… Continue reading “I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David
Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith]… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her… Continue reading “Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
“Not in this fight alone.” An interview with multiple sclerosis patient Monica
Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and… Continue reading “Not in this fight alone.” An interview with multiple sclerosis patient Monica