patient spotlight

“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but learned so much more. He shared what it’s like to live with HP, how he uses PatientsLikeMe to learn more about his own health and how the community has helped him to stay inspired in his fight. Can you share a bit about your chronic HP? Can you explain to our blog followers how it’s different than IPF? I believe the major difference is that with hypersensitivity pneumonitis there is a cause. If I’m correct there are three forms: acute, subacute and chronic. All are caused by exposure to an antigen that may or may not be identified. In my case, I have chronic hypersensitivity pneumonitis (HP). My specialists have determined that it’s not necessary to identify the antigen since my condition is chronic and cannot be reversed.1 What was your diagnosis process like, and how was it different than what you’ve heard about getting …

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“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below. The journey Occasionally I received cards in the mail offering discount lung or heart screenings. I think most people do now and then. I always throw them in the trash. In May 2012, I received one. For some reason I didn’t throw that one away. I called and scheduled an appointment for the heart and lung scan. Was told I’d get a letter in two weeks letting me know the results. Imagine my surprise when 4 days later I received a voice mail asking me to call the hospital back as soon as possible. With feelings of dread and fear, I returned the call. Was told they were concerned about 2 places in my left lung. Was cautioned to not jump to any conclusions. They could be any number of things. I needed to have testing done. Was scheduled for MRI and PET Scan. Those results were …

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“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below. What went through your mind when you were diagnosed with RRMS back in 1994? I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life. It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community? I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that …

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“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called “Motor Neuron Disease Made Easier.” Steve spoke with us about the decisions that come with a MND diagnosis, the inspiration for his film and “how adaptable one can be in the face of adversity.” Read more about Steve’s story below and head to his blog to watch his film. Looking back over the last 7 years since your diagnosis with ALS/MND, is there anything you’d like to have known sooner that has helped you along your journey? I think I was fairly pragmatic about researching the condition from the outset, so there haven’t been many surprises apart from the fact that I am still here 7 years later (and I just realized it’s actually 7 years to the hour as I write). One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. There is so much equipment, …

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“Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer

That’s Phil’s (PhillyH) personal motto in life – “hope won’t make it happen.” She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview with us, everything from the reaction she had after her blunt diagnosis to her treatment decisions and son’s new tattoo. Phil also shared her thoughts on what every person who has just been diagnosed with lung cancer should know. As she says, “If you don’t know, you can’t do” – read below to learn about her lung cancer journey. When you were diagnosed with lung cancer in 2012, what was going through your mind? My first reaction was defense. Somehow I had to deflect the enormity of what I had been told. I was so disappointed, I had been prepared for pneumonia. After all I felt well, wasn’t sick, wasn’t losing weight, still doing everything I had always done. I was so very angry about the way the doctor gave me the news. Before I had even sat down she bluntly announced “well it’s not good news.” I’m …

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“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines

PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his experiences in an interview. Lucas talked about his recurring insomnia and nightmares, and how quitting alcohol and speaking with fellow veterans has helped him cope with his PTSD. Read what he had to say below. Will you tell us a little about your story? I enlisted in the military right before I turned 18, graduated basic training about a week after I turned 18. I was in the Marine Corps for about three years total after all the paper work was done. I was discharged medically- honorable retirement discharge because I was injured. I was on my second tour, about half way through when we were taking air fire and I was trying to get everybody over the wall and I looked back, after I got the last person over, I looked back to make sure everything was clear and that’s when I saw an …

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“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge

Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009) took on the challenge, and we caught up with him to find out why. Steve shared about his own diagnosis experience, what he thinks about the ALS community on PatientsLikeMe and what he hopes to see come out of the IceBucketChallenge. Don’t forget to follow Steve on his own blog, too. He calls it Bachblog.  Can you tell us a little about yourself and your diagnosis with ALS? I first noticed an odd cramping in my left hand sometime during the summer of 2009 when I was 49 years old. That fall, I realized I no longer had the strength to use fingernail clippers with my left hand. At the time, I was playing pickup basketball two or three days a week. I began to notice that after one hour of basketball I was “wiped out” and that I was having difficulty taking longer shots. …

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“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS

  There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight supplements. Read on to learn more about her ALS story and why she thinks every person living with ALS should become their own best advocate.   Tell us a little about yourself and how you are doing, Dee. I am 62, married and a mother and grandmother. I have bulbar onset of ALS. I have always been very active and independent to a fault. I was raised horseback riding and still have a horse. I am told my disease is progressing slowly but of course to me it doesn’t feel that way. Many people in the community talk about how finding an official diagnosis isn’t easy – what was your experience like?  I actually found out fairly quickly. My symptoms started in April 2013. First doctor thought it was a stroke, second told me it was stress and of course they did MRI’s and blood …

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“This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD

Talking about past trauma isn’t easy – so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you may not see visible symptoms, a person can still be suffering on the inside. Will you tell us about your story and what happened? On January 11, 2012, when my husband Tim, my daughter Amanda and I left home around 5:45 PM to pick up my friend’s children for church, we had no idea how much our lives would forever be changed. Statistics show most accidents are within 2 miles of your home, but I wonder what statistics are for accidents caused by your neighbor’s teenage daughter. I was driving and waiting to turn into the development where my friend lives, and as I looked in my rearview mirror, I noticed headlights coming closer and getting brighter. I started yelling to my husband that the car behind us isn’t slowing down. I tried to hit the gas, BANG…I remember seeing the Ford emblem on my steering wheel, …

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“MS doesn’t define anyone” – PatientsLikeMe member Anna shares about her journey with MS

We’ve had the pleasure of featuring many PatientsLikeMe members on the blog, but never one with a nickname quite like this. Anna is living with MS and we caught up with her to talk about coping, finding support, her motorized scooter and where the name “Mad Anna” comes from. Read below to see what life with MS means to her along with a poem she wrote not long after being diagnosed. Thanks for sharing, Anna! Will you tell us a little about yourself? I’m 56, mad as a brush (but responsible in the necessary ways). Love nature and the great outdoors. Used to walk (had dogs) and cycle loads. I’ve mostly worked with vehicles/transport after a start in office work, which I hated, so I moved on to chauffeuring, bus driving, driving instruction (cars, buses and lorries), agency lorry driving while I ran down my driving school in readiness for…tube train driving. Fate playing its hand in getting me from a self-employed status to employed by a company (London Underground) who doubled my 10-year pension with them and medically retired me when I was too crocked to stay there. That move also enabled me to leave a bad marriage, but …

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