9 posts from April, 2013

Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”

Posted April 18th, 2013 by

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath. In this first part of our three-part series, Keith and Sarah talk about why they started blogging, and the difficulties of finding the right diagnosis.

Keith:Sarah1

What prompted you to start blogging about Keith’s journey and what’s the reaction been? 

[Sarah] When Keith’s health took a turn for the worse in the winter of 2011, I asked him repeatedly if he would allow me to share his story, knowing that we were likely going down a very difficult road, and selfishly wanting lots of support while we (I) went down that road. He wasn’t comfortable sharing until the day we drove away from his respirologist’s office, after an appointment where the doctor said that Keith was “fine,” wasn’t a candidate for transplant, and didn’t need to be on oxygen. We knew different. I blogged, we got a second opinion, and Keith was on oxygen within 4 days, and referred to the transplant program at Toronto General Hospital (TGH) within 2 weeks.

At what point did you know that something was not right? What was your first symptom?
[Keith] I got a cold that wouldn’t go away, and it turned into a pneumonia. I was hospitalized in the fall/winter of 1997. I never fully recovered.

What was involved in finding a diagnosis? Did Keith ever receive an official diagnosis?
[Sarah] Keith visited various specialists and respirologists and was misdiagnosed with various diseases (BOOP {bronchiolitis obliterans organizing pneumonia}, COPD, asthma) before the final diagnosis of diffuse panbronchiolitis (DPB) was given. It was a strange diagnosis since the disease strikes people of Asian descent, and Keith is Caucasian. DNA testing was done to see if there was Asian blood in his makeup, but there was not. Interestingly enough, in the final pathology of Keith’s old lungs after removal – this diagnosis was confirmed.

What advice do you both have for patients that are struggling to find a diagnosis? 
[Sarah & Keith] Ask as many people as you can who have experience with lung disease, or know someone who has it. Find out doctors’ names, get referrals and stick to your guns. If you don’t feel right, tell someone!


Irritable Bowel Syndrome Awareness Month

Posted April 15th, 2013 by

Did you know that between 9%-23% of people around the world suffer from irritable bowel syndrome (IBS)? However, many remain undiagnosed and just aren’t aware “that their symptoms indicate a medically recognized disorder.”[1] April is IBS Awareness Month and the International Foundation for Functional Gastrointestinal Disorders (IFFGD) is working to get information out to the public and advance research.

IBS

There are some easy things you can do to get involved in your community or even right from your home. Here are just a few of the ways you can help the IFFGD get the message out and help raise awareness.

If you’re living with IBS, find others just like you in our growing community of almost 3,000 IBS patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.



[1] http://www.aboutibs.org/site/about-ibs/april-ibs-awareness-month