13 posts from March, 2017

It’s Kidney Month: 44 Celebrities With Kidney Disease

Posted March 28th, 2017 by

Can you name any celebs with kidney disease?

Roughly 14 percent of Americans have chronic kidney disease, and it claims more lives than breast or prostate cancer every year. But it’s not a condition you often hear about or see splashed on magazine covers.

March is National Kidney Month, so we explored some well-known people who’ve been affected by this “silent disease.”

Celebrities with kidney disease

All walks of life

As the Childhood Kidney Support Network notes in their list of 44 famous people who have battled kidney disease, it affects people of all ages, races and walks of life – even cowboys (Buffalo Bill) and royals (Prince Rainier III of Monaco). Here’s a sampling of stars on the list:

  • The Hollywood crowd – Directors Stephen Spielberg, Howard Hughes and Alfred Hitchcock; actresses Sarah Hyland (Modern Family), Sandra Dee, Marlene Dietrich and Veronica Lake; actors Gary Coleman (Diff’rent Strokes), George Lopez (comedian/talk show host), Dom DeLuise and Laurence Olivier; and TV chef Julia Child
  • Artists, writers and musicians – Mozart, Cole Porter, Robin Gibb, C.S. Lewis, Norman Mailer, Natalie Cole, Emily Dickinson, Barry White and Neil Simon
  • Athletes, military leaders and more – Douglas MacArthur (U.S. Army General), Jonah Lomu (rugby player of New Zealand), Jack Brabham (Australian race car driver), and Bobby Fischer (chess player)

Know the signs

Kidney disease is often referred to as a “silent disease” because it often has no symptoms in its early stages and can go undetected until it is very advanced. “Only 10 percent of people with chronic kidney disease know that they have it,” says Dr. Joseph Vassalotti, Chief Medical Officer at the National Kidney Foundation.

Because symptoms don’t always show up early on (or can be attributed to other health conditions), it’s important to know these possible signs, according to the National Kidney Foundation:

  • You’re more fatigued than usual and having trouble concentrating
  • You’re having trouble sleeping
  • You have dry, itchy skin
  • You feel the need to urinate more often
  • You see blood, excessive bubbles or foaminess in your urine
  • Your ankles and feet are swollen
  • You have a poor appetite
  • Your muscles are cramping

On PatientsLikeMe

More than 1,500 members have chronic kidney disease. Commonly reported symptoms include fatigue, pain, insomnia, and depressed or anxious mood.

Are you living with chronic kidney disease or another kidney condition? Track your condition and treatments and connect with others like you in the PatientsLikeMe Kidneys and Urinary forum.


“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

Posted March 24th, 2017 by

Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work.

What first drew you to working at PatientsLikeMe? Can you describe what you do in your role here? 

A former employee and friend of mine, Joe, first introduced me to PatientsLikeMe in 2012. I decided to sign up as a patient and see what it was all about. When I saw that it included a robust fibromyalgia community, I was touched personally by the fact that someone like my mother, who has this mysterious condition, could talk and learn about it from other people.

In my current role as a software engineer, I provide technical leadership to the PatientsLikeMe client team. We focus on supporting outside partnerships and collaborations, especially when it comes to custom software development.

How does living with GERD affect you day to day? How do you use PatientsLikeMe as a patient?

For a while, GERD started to change my life. I was no longer able to drink coffee, eat anything with tomatoes and, in general, I was feeling a burning sensation in my esophagus on most days. It started to affect my concentration and my mood. On the plus side, I made some healthy improvements to my life – drinking a lot more water, exercising regularly and cutting down on one of my worst habits (eating late at night). But until I was prescribed Prilosec, it was definitely a frustrating challenge. At this point, the prescription has me feeling pretty much 100 percent, other than the fact that I’ve given up coffee for a strong breakfast tea every morning. I have a cup now and then but, all in all, coffee and my stomach do not get along.

I use PatientsLikeMe to track how I’m feeling and why – I try to leave comments along with my InstantMe. It helps me identify bad habits and external factors that exacerbate my condition. I also like to see how other patients with my condition are faring, what treatments are working, and, in general, it’s been eye opening to see how many other people have experienced the same things I have with GERD.

When was your mom diagnosed with fibromyalgia? Can you share how her diagnosis affected her and your family? 

My mother, Maria, was diagnosed with fibromyalgia, after several fits and starts, in 1997. For some time, we had no idea what was going on. Only after several second opinions, Fifth’s disease and Fibromyalgia were identified as potential culprits for her pain, inflammation, and total fatigue. It had a huge effect on our family as she was always the motor that kept us going. My father worked a lot but really wasn’t very active around the house with chores, cooking, homework and things like that. On top of that, my mother worked as his accountant full-time.

It shook us all for many reasons. I had never encountered a problem our healthcare system did not have some reasonable explanation for or plan to address, other than terminal illnesses. We’ve both taken strength from other people’s stories on PatientsLikeMe, like Team of Advisors member Craig’s inspiring post about fibromyalgia that led my mother to say, “That’s exactly what it feels like!”

How is your mom doing these days? 

My mother still struggles with fatigue and has given up some of her favorite things, like gardening, due to arthritis-like pain. She has to limit her driving time, which results in missing family events on occasion. Really, anytime we plan an event or trip together, it is generally constrained by managing her energy levels. We’re lucky to still be together as a family, but it is definitely something we have to always keep in mind with her. I would like to say that overall she’s doing fine and couldn’t be happier to spend time with my daughter – her granddaughter, Mariana – lately. She watches her two days a week, and I’m not sure it would be possible without PatientsLikeMe. I’m able to work from home on those days and give my mom a quick hand if she is in pain – just another reason we are so grateful to be part of the PatientsLikeMe family.

How does your and your mom’s experience shape your work here?

Typically, I am someone who takes great ideas from other PatientsLikeMe staffers and puts them into practice through software development. But I’d like to think my experience as a patient and son helps me view the website from that vantage point and make good suggestions, if I see anything we can improve.

And, of course, I couldn’t be happier to get up every morning and go to work somewhere that has a truly inspiring mission and has touched my family. It’s a real blessing!

What do you like to do for fun when you’re not at work? 

For the last six months, I’ve been focused on my stepson, Daniel, and his brand-new baby sister, Mariana. She never wants to stop – mostly demanding that I help her try to stand up and walk, walk, walk. Danny’s first language was Spanish, so we spend extra time reading and doing homework to catch up on some of his English skills while we reinforce his already great math skills. We also find plenty of time to play “Just Dance,” ride bicycles, go sledding and all the fun things. Personally, I really like to get outside and stay active – mountain biking, skiing, hiking. It’s a lifelong passion and it helps me stay in good health – something I know not to take for granted. In the evenings, I like to relax with a National Geographic or a good video game like “Tomb Raider.”

 

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