Kevin Schaefer

Hey everyone! Check out this news story about a sickle cell patient who described his experiences with gene therapy.

Do you have any questions about gene therapy?

Hey everyone! Hope you all had a safe and relaxing weekend. For those here in the U.S., I wish you all a good Memorial Day.

So, as states and other places around the world begin to reopen, I wanted to get your thoughts. I don’t want to start anything political here. Rather, I’m just curious if anyone here feels comfortable going out som…[Read more]

So I’m sure you’re all pretty tired of hearing about COVID. Paying attention to the news right now is exhausting.

However, I did want to share this column about COVID-19 and post-traumatic growth. The author, Brianna Albers, is a writer for one of our sibling sites. She’s been writing about mental health coping mechanisms, speci…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

Today, I wanted to start a conversation about setting personal goals. Obviously, it’s an unusual time to even think about this subject. Between the COVID-19 pandemic and just trying to stay healthy, most of us aren’t focused on the future.

Still, I actually think it’s a great…[Read more]

Since the COVID-19 pandemic is having a major impact on our healthcare services, we have to approach medical appointments differently than before. TeleMed and other virtual services could become the new norm. Still, some appointments and procedures need to be in-person. It raises questions about how we can best approach appointments with our…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

I wanted to share this book with you all. This is a collection of essays from the New York Times disability series. The book’s contributors include people living with quadriplegia, chronic illnesses, blindness, and more. The idea is to give people with a plethora of visible and i…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

I wanted to ask if anyone here does online therapy. With all of the stress and anxiety in the world right now, it’s as good a time as any to focus on mental health. And since we’re all on lockdown, online therapy is a great alternative to in-person appointments.

There’s one s…[Read more]

Hey everyone! Hope you’re all staying safe and healthy.

Today, I wanted to give a shoutout to all of the caregivers in this community. Especially in a time like this, I want to express my gratitude to everyone who continually gives and sacrifices to care for a loved one with Sickle Cell.

I came across an article on the importance of s…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

Check out Tito’s latest column here. She writes about practicing gratitude, especially during difficult times. For her, keeping a gratitude journal and making note of the little things helps her stay motivated.

This passage sticks out to me: “At the end of the year, I emptied…[Read more]

Hey everyone! Congrats on making it through another week of quarantine.

So I wanted to ask you all about using TeleMed for medical services. TeleMed is a popular resource for live medical answering services for patients and healthcare providers. Especially with the COVID-19 pandemic, I was wondering how many of you are using TeleMed for…[Read more]

Hey everyone! Hope you’re all staying safe out there.

So I wanted to ask you all about staying fit during the COVID-19 pandemic. I know it’s tough for a lot of us, especially when we can’t go to PT and regular appointments right now (I’m in this boat). Plus, binge-eating is tempting when you’re stuck at home (don’t look at me).

Sti…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

So I just wanted to do a mental health check-in. Obviously it’s a stressful time, but how’s everyone doing mentally and emotionally? For me, I’m just trying to take things day by day. I’m keeping a lockdown journal, reading, watching movies, calling friends and family, and going o…[Read more]

Hey everyone! We made it through another week.

I wanted to share this video with you all that I came across a few months ago. This is a fascinating video, in which a group of people with disabilities discuss topics like ableism, dating, and living with a disability. The idea is to show that within disability communities, people think…[Read more]

Hey everyone! Hope you’re all staying safe, healthy, and (relatively) sane out there.

Check out Mary’s latest column here. She writes about the importance of rest during this time, and how this is a form of activity in and of itself. Since we’re all on lockdown, there can be pressure to do things like learn a second language or practice a n…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

So since we’re all stuck at home right now, I was wondering if anyone had any good podcast recommendations. Since I work from home anyway, I listen to a lot of podcasts during the day. My favorite is called Beautiful Anonymous, a conversational show hosted by comedian Chris G…[Read more]

Hey everyone! Hope you’re all staying safe out there. We made it through another week!

Check out Tito’s latest column here. With all of the fake news going around in our world, Tito provides a good reminder to check your sources when it comes to COVID-19 content. Now that we’re in the middle of a global pandemic, the last thing we need…[Read more]

Hey everyone! Hope you’re all staying safe and healthy out there.

So with everything going on in the world, I thought I’d do a lighter post about entertainment recommendations for quarantine. I’m a huge pop-culture guru. This is just my personal list of book, movie, and Spotify recommendations. I’m leaving out TV, since there are just too m…[Read more]

Hey everyone! Hope you’re all staying safe out there.

My name is Kevin Schaefer, and I’m the Forums Director for this site’s parent company. I don’t have sickle cell, but I have another rare disease called spinal muscular atrophy (SMA). You can read about my life and experiences in my column here.

As someone who is also a high-ri…[Read more]