Have you seen the awareness ribbon with the puzzle pattern? It’s the symbol for autism awareness, with the puzzle pieces representing the mystery and complexity of autism spectrum disorders (ASD). The different colors and shapes also highlight the diversity of families living with this condition, which occurs in 1 in 110 births in the US… Continue reading Recognizing Autism Awareness Month
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device
For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost. But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one. The… Continue reading Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device
ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood… Continue reading ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
Preparing for Life After an Organ Transplant
Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant. Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe. Split equally in gender with ages ranging from 25 to 60 years old, our discussion… Continue reading Preparing for Life After an Organ Transplant
Interview with Jim Atwell, Author of “Wobbling Home: A Spiritual Walk with Parkinson’s”
Continuing our coverage of Parkinson’s Awareness Month, we’d like to introduce you to Jim Atwell, a PatientsLikeMe member who has been living with Parkinson’s disease (PD) since 2007. A retired college professor, late-in-life farmer and weekly columnist for his rural newspaper, Jim recently published his second book, Wobbling Home: A Spiritual Walk with Parkinson’s. This… Continue reading Interview with Jim Atwell, Author of “Wobbling Home: A Spiritual Walk with Parkinson’s”
Observing Parkinson’s Awareness Month
Since 2010, April has been designated as Parkinson’s Awareness Month by the US Senate. The goal is to shine a spotlight on the national impact of Parkinson’s disease (PD), which affects more than one million Americans. A progressive disorder of the nervous system, PD is often marked by muscle tremors, muscle rigidity, decreased mobility, stooped… Continue reading Observing Parkinson’s Awareness Month
Love Your Scars: An Interview with Transplant Recipient Amy Tippins
After five years of dealing with undiagnosed multiple hepatic adenomas (hemorrhaging tumors), PatientsLikeMe member Amy Tippins underwent a liver transplant in 1993. Two years ago, she received a ligament allograft using donor tissue. How does she feel about it all today? Check out our interview with this transplant activist to learn how these experiences led… Continue reading Love Your Scars: An Interview with Transplant Recipient Amy Tippins
Today’s Photo: A Celebration of Solidarity
The weather is warming up, and calendars are filling up. That means it’s time to starting thinking about spring walk/run events for your health condition! For inspiration, please meet multiple sclerosis patient NewLife (center), who led a PatientsLikeMeInMotion-sponsored team at Walk MS in St. Louis, Missouri. Including a monetary donation from PatientsLikeMe, NewLife and her… Continue reading Today’s Photo: A Celebration of Solidarity
A Peek at the March Newsletter for Members
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our March edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up… Continue reading A Peek at the March Newsletter for Members
What Do You Know About Endometriosis?
March is Endometriosis Awareness Month, which means it’s a good time to brush up on this common women’s health problem. For example, did you know that endometriosis gets its name from endometrium (en-doh-MEE-tree-um), the tissue that lines the uterus? Or that this often painful condition occurs when that tissue begins to grow in other places,… Continue reading What Do You Know About Endometriosis?