Team of Advisors

Patients as Partners: Allison shares her insight on teaming up with organizations

This year’s Team of Advisors has been sharing how they use the Partnership Principles in their health journeys. Today, we hear from Allison, who’s living with bipolar II. Allison is a volunteer with the National Alliance on Mental Illness (NAMI) in Dallas and also runs support groups for the Depression Bipolar Support Alliance (DBSA). See what she has to say about the two principles that she relies on most in her relationships with these organizations, and what she’s learned along the way: “I realized I could use MY voice to help others.” Can you tell us a little about the different organizations you’ve partnered with? I have been working as a volunteer with NAMI Dallas. NAMI is the National Alliance on Mental Illness. I was on the NAMI Dallas board of directors. NAMI has affiliates in every state. They have programs for family members and for people living with a mental illness. I am a volunteer scenario trainer for Dallas Police Department. The scenario training is part of a 40-hour class that the officers take, focused on Crisis Intervention Training. I am certified to run support groups for DBSA (Depression Bipolar Support Alliance). How did you initially get involved? After being …

Patients as Partners: Allison shares her insight on teaming up with organizations Read More »

Patients as Partners: Cyrena talks empathy and assertiveness

We’ve been talking to 2015-2016 Team of Advisors about the Partnership Principles they put together and how they use them in their personal health journeys. Next up is Cyrena, who’s living with bipolar II and lupus and recently completed her PhD in pharmacology. Below, she talks about managing multiple conditions, getting on the same page as her doctors, and the need to be both empathetic and assertive in your relationships with your care teams. Plus, stay tuned for more from Cyrena soon!  What I’ve learned: Know your needs, make shared decisions As a graduate student in pharmacology with an interest in mental illness and immunology, I usually find myself in a unique position in the “hot seat.” I don’t view my physicians as all-knowing entities. I am not a physician, but I have a knowledge base, both about disease processes and my own body. What I bring to the table is just as important as what they bring, and therefore I view my interactions as a partnership on mostly equal footing. (After all, I don’t have prescribing privileges!) Studies at the PhD level require a level of stamina and mental acuity that aren’t always present in patients with lupus and bipolar …

Patients as Partners: Cyrena talks empathy and assertiveness Read More »

Patients as Partners: John and David share their clinical trial experiences

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below, they share their firsthand trial experiences, offer up some advice for others, and talk about the importance of collaboration and mutual respect with their care teams along the way. Can you tell us a little about the clinical trials you’ve participated in? John: I took part in trials at: Massachusetts General Hospital (September 2014) – phase 2, randomized, double-blind placebo-controlled Multicenter Study of Autologous MSC-NTF Cells in Patients With ALS Bronx VA – Brain and nerve stimulation for hand muscles in spinal cord injury and ALS Weill Medical College of Cornell University – Safety of Capryclic Triglycerides in ALS: A Pilot Study David: I was diagnosed with stage four metastatic lung cancer just about five years ago. June 2011. Since that time my only form of treatment has been targeted therapies which were available to me through clinical trials. The first clinical trial I received …

Patients as Partners: John and David share their clinical trial experiences Read More »

Patients as Partners: Gus and Maria talk partnering with your caregiver

The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how they work together as a team. How has it been managing your dual roles of husband/wife and now patient/caregiver? What is the biggest challenge in this? Gus: I believe the hardest thing has been always feeling I was in control and didn’t need anyone’s help or assistance. But how the tables have turned, I lean on my wife more than ever before, with the understanding I try every day to be as independent as possible. I truly see how tired my wife gets and how frustrated this illness has made her feel. I respect her time and appreciate everything she does for me. I sometimes push her towards taking a time out and spending time for her. She needs time for herself and to unwind from all of this. The listening part sometimes gets very difficult, because I see things and don’t communicate them correctly. …

Patients as Partners: Gus and Maria talk partnering with your caregiver Read More »

Patients as Partners: Member Peggy on the diagnosis journey (Part I)

Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed.  Peggy draws from her own experience with kidney cancer and breast cancer to answer some important questions patients face in their diagnosis journey. Check out what she has to say about advocating for yourself below, and stay tuned for more from her soon! How do I advocate for myself? When you need to see a doctor for a new or a recurring problem, you are told to “be your own best advocate.” Sounds good in general, but is it really necessary? Answer: YES. You have tried to figure out what is wrong and you need help. That sore knee is just not healing, or that odd breathlessness seems more frequent. Your family is tired of your complaints or you just “know” something is wrong. Practice telling your story to the doctor, completely and accurately, so he might really listen to all of it. He may interrupt you within 18-20 SECONDS, studies show. If you are prepared, you will be more …

Patients as Partners: Member Peggy on the diagnosis journey (Part I) Read More »

“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month

In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors! Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune disease often associated with rheumatoid arthritis that affects nearly 2,000 other PatientsLikeMe members. She also shares how she manages Sjögren’s along with her other conditions (bipolar II, depression and thyroid issues), and offers some advice to patients in her situation: “Take it moment by moment.” Tell us about your diagnosis experience. It started with pneumonia. After a batch of antibiotics, I was OK. Then I got a glandular infection. More antibiotics. Two months later and it was back again, it looked like I had the mumps, but it was my glands behind my ears again. My primary doctor suspected something and ran a complete blood work on me. Testing for RA and lupus and everything else. I came back negative for RA, but positive for something called Sjögren’s syndrome and nothing else. Most doctors only know that you get dry eyes and dry mouth from Sjögren’s syndrome. …

“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month Read More »

Meet Laura from the PatientsLikeMe Team of Advisors

  We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus. Laura has spoken before the FDA, regularly blogs about IPF on various social platforms and recently started a support group at a local pulmonary rehab center. When we caught up with her, she told us: “I never thought this would be my path but it has been very rewarding.” Below, Laura opens up about the loneliness of living with a chronic illness and how important it’s been for her to connect with other patients who know what she’s going through. What gives you the greatest joy and puts a smile on your face? My grandbabies, both children and animals. Both have no expectations of my limits and love me unconditionally. No matter what they do they make me happy. Soon I will be a great-grandmother and the joy of knowing I’ve lived to see it is a blessing. How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like? …

Meet Laura from the PatientsLikeMe Team of Advisors Read More »

Meet Angela from the PatientsLikeMe Team of Advisors

Say hello to Angela, another member of your 2015-2016 Team of Advisors. When she was diagnosed with MS in 2010, Angela was writing a book while balancing a busy schedule as a university lecturer and community volunteer. Angela sat down with us recently to talk about the new challenges of leading the life she wants with MS, and described the isolation that can come with living with an “invisible disease.” Below, she shares why she always keeps a notebook handy and offers some advice to others with chronic conditions: “Turn your focus outward. Look for ways to give back.” What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? Biggest obstacle so far? The natural perception we have that if someone looks “normal,” then they must not be ill or incapacitated. Have you ever been critical of someone parking in a handicapped parking space because that person got out of the car, walked into the store, and appeared to be fine? Invisible diseases may require huge amounts of energy just to walk that shorter walk. On the other hand, friends …

Meet Angela from the PatientsLikeMe Team of Advisors Read More »

Meet Phyllis from the 2015-2016 Team of Advisors

 We’d like to introduce you to Phyllis, another member of your 2015-2016 Team of Advisors. Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. Still, the former mayor of Princeton, NJ, leads an active life by spending time with her grandchildren, cheering on the Mets and taking brisk walks when she can (she’s run 18 marathons in her life). Phyllis is also involved in a mentoring program at University of Pennsylvania, in which first-year medical students shadow her for over a year. The purpose is to bring humanity back to medicine by helping the next generation of doctors to better understand the patient perspective. Below, Phyllis describes the power of a positive attitude and shares the lesson she’s learned from living with cancer: “Every day is a gift.” What gives you the greatest joy and puts a smile on your face? My eight grandchildren. In 2005 when I was diagnosed with CTCL (Cutaneous T-Cell Lymphoma) and later Sezary Syndrome, a non-Hodgkin’s lymphoma, I had three young grandchildren. Now 10 years later, I have the joy of seeing five more. I always enjoyed running. I was a marathoner (completed 18), but once I got my cancer, my …

Meet Phyllis from the 2015-2016 Team of Advisors Read More »

Meet Cyrena from the PatientsLikeMe Team of Advisors

  Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology. Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a challenge. She believes there is a lack of resources in higher education to support students with chronic illnesses. Still, this hasn’t stopped her from taking control of her health. Below, Cyrena shares how she’s tracked her mood on PatientsLikeMe for over seven years, and how she prepares for every doctor visit to make sure all her questions get answered. What gives you the greatest joy and puts a smile on your face? Probably a full 24 hours with no obligations other than to play with my two cats, eat whatever I want, and hang out with my partner all day. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? The greatest obstacle that I have faced living with chronic illness has been getting through …

Meet Cyrena from the PatientsLikeMe Team of Advisors Read More »

Scroll to Top