Here are stories of Sarcoidosis Patients in their words and their families words
AllStripes Sarcoidosis Ambassador and Patient
Prior to the formal diagnosis. I had symptoms of Sarcoidosis for a seven-year period. I had not heard of Sarcoidosis so just continued to go to various Drs. As each symptom presented itself. None of the specialists I was seeing even thought to link the symptoms, which of course now, make total sense. My symptoms were Asthma, increased joint pain, fatigue no matter how much coffee I drank or how long I slept. The joint pain became severe. I was put on disability via Orthopedic specialist 2007. Still no mention of Sarcoidosis. Spine involvement became severe. I went through periods of such difficulty walking. Still no linkage of Sarcoidosis. Overall health deteriorated to the point I could no longer work. By this time, I have systemic inflammation, lungs that were sensitive to environmental changes, loss of smell for weeks at a time, or smelling smokes off and on. Still no mention of the possibility of Sarcoidosis. I had so many physical signs and symptoms. My health was so bad, I won my disability case without need for a lawyer. My corneas went into rejection in 2010. I had the right eye transplanted. All was okay. I awoke on 2nd day looked like I was stung by a bee in my left eye. I immediately went to Dr. It was then his colleague, took photos reviewed my chart and ask me basic health question. Dr. Winn saved my life. I left that office afraid, and relieved at the same time. “I suspect you may have a thing called Sarcoidosis he said. He also said he is surprised with all these recent medical concerns it wasn’t mentioned before. He asked can he biopsy the mass just below my left eyebrow, and on February 2011 I was confirmed via lacrimal involvement I had Sarcoidosis all that time. I needed time to process, research and Dr. Winn immediately put me on 50mg of Prednisone and referred me to a Rheumatologist. I didn’t tell my mother yet, I needed to get a handle on this. My special needs son was being bullied in school. So, I began homeschooling him during this time also. Dr. Winn, and Dr. Kang gave me my life back no matter how scared I was of the diagnosis. The Preds restored more mobility, less pain moving, and of course all other symptoms. I researched; Dr Kang listened, did various tests and explained so much to me. She was familiar with Sarcoidosis. I still didn’t tell My Mother yet. My Mother also had been ill for a Decade. I thought her health deteriorated more and more since the loss of My father. So unfortunately, I did what other commonly do to those with invisible diseases. I blew it off. Told her she needs to do this or that. Told her she needs her meds revaluated and get rid of her Dr. I did everything wrong during that time. Finally, she did see a new Dr. he reviewed everything. He then told her she had Sarcoidosis. When she called me, she couldn’t pronounce it correctly, so I finished the word. I’ve always been medically inclined so she knew I would know. It was then I told her I have it also. It was then she told me there was nothing they could do for her. She had far to may severe health issues, they felt that was the cause of her heart and lung issues and she couldn’t take the steroids in any form at this point. They told her there was nothing they could do for her. I told her no Come her to NY and see my Drs and we will see since familiar. Tickets were bought, plans were made she ever made it here. She died 4 Months later. Sarcoidosis destroyed my life, took my mother and has me in daily various degrees of pain in various areas of my body, at times it makes my lungs sensitive, everyday life activities are not done every day. I have 17 Medical issues, a case of medications, monthly infusions, etc. Having Sarcoidosis has fully put my life into perspective. Yes, it stripped me to the core of my being with each new area affected, and each new diagnosis. It also has made me a force of nature, with an iron will and a fight for life that’s unparallel. I am looking forward to My future, new career, and raising my son to be able to be independent, and a great human being. Grateful, and not wasting a second.
Here are stories of Sarcoidosis Patients in their words and their families words
Margaret Bailey - Cooley
Fallen Sarcoidosis Patient Warrior
Margaret was selfless. If there was anything that needed to be done for her family, she is who was called. Margaret was brilliant. Spending her evenings answering every question on jeopardy, always with a crossword puzzle book on her lap and constantly forcing her daughter to trivia nights. Margaret was curious. She was an avid reader. Her good reads profile shows 500 books that she has finished with more than 50 on her “up next” list. She could answer almost any question you had and would let you know easily when you were wrong. She had a laugh that could be heard from almost any place in the house. She had a way of making you feel special and loved within the first minutes of meeting her. There are things that happen in life where one asks, “why me?”. Things that happen that leave you questioning why bad things happen to good people. Except, not with Margaret. There wasn’t a room full of people she walked in who didn’t notice the love and kindness radiating from her smile – even during her darkest days. Diseases like sarcoidosis are often invisible to those who aren’t aware. Aside from the oxygen tubes and tank, there would be no way to tell how much she was struggling. A year ago, on April 21st, 2021, Margaret’s battle with Sarcoidosis came to an end. Through this journey, I’ve learned that some souls are too beautiful for this world, but we remain thankful for the time we got to know them. To anyone who has experienced this disease, to anyone who has been a caretaker of a loved one with a chronic illness – I see you. Stay hopeful, stay gracious. Know that your story is not the end and may be the survival guide for someone else. Margaret Bailey - Cooley deserved the world. I hope she left this earth feeling loved. I hope she knows that we are thinking and talking of her daily. I hope she knows the impact of her life spreads far beyond what we can see. Thank you to Stronger than Sarcoid for allowing me to share just a piece of Margaret’s story. Her daughter, Ashley Cooley (27) Columbus, Ohio
Sarcoidosis Patient Advocate
If you ask anyone who was alive in 2001, “Where were you on 9/11?”, they’ll know what you’re talking about immediately. It’s one of those days that will stick with us forever. Some people remember being glued to their television. Other people who were living in and around New York City have even more vivid memories. My name is Raul. In 2001, I worked in the New York Police Department and spent months sifting through the debris of the World Trade Center. Back then, my focus was just on surviving in the moment. I wasn’t thinking about what else could be going on. But for many first responders on the scene, there are psychological traumas that we’re still dealing with today. I wasn’t looking at my big picture. I guess I was complacent, not really taking notice of my shortness of breath or skin lesions. So, I hope that my story can help others overcome their own complacency. That’s why I want to thank Boehringer Ingelheim Pharmaceuticals for sponsoring me so I can share my story. Let me back things up a bit. I joined the NYPD in 1985, and by 2001 I’d worked my way up to Internal Affairs, where I supervised other detectives. I was also a combat medic in the Army Reserves and loved to drill on weekends and be the best soldier I could be. Overall, I was an active guy with a good career path. 2 But by early 2002, I started getting lesions on my skin and shortness of breath. I was in optimal shape and had never had any problems, so I knew something was wrong. I saw my PCP, and from there, things happened really quickly. She did some x-rays and a CT scan and sent me to a surgeon to get a lung biopsy. In May 2002, I was diagnosed with sarcoidosis. I was stunned. Not knowing anything about sarcoidosis, I thought that it would leave me debilitated and unable to do my job, and that I’d die soon after. But my doctors helped me realize this wasn’t going to be an immediate death sentence: there were things I could do to manage it and medications I could take. So, my outlook improved, and I tried to get back to living my life the way I always had. That was a lot easier said than done. In late 2002, I was promoted to lieutenant, which meant I was out on patrol and supervising people in the field. I thought I should be feeling better, but instead I felt worse. I know now I was pushing my body too hard; I was putting in a lot of overtime hours and adding more stress to my life. It got so bad that there were days I could barely get myself motivated enough to get out of bed. At the same time, I was still dealing with the lingering stress of what I’d seen after 9/11. It was just too much, and something needed to give. So, when an opportunity came up to work for the U.S. Treasury Department as a police officer, I took it. I didn’t want to retire from the NYPD, but I knew my body couldn’t handle it anymore. 3 There was a lot less stress and pressure working for the Treasury, but I was still having a hard time physically. I barely made it through the Treasury Academy, and I struggled with my two mobilizations in the Army, where I trained medics going into combat. I had problems with weight gain and joint pains, and eventually needed to replace both knees before I was 49. Every time I talked to my doctors about my pain and fatigue, they kept blaming it on the sarcoidosis. So, I just kept taking the drugs they prescribed—skin creams, steroid shots in my knees and back, treatments for hip pain—and didn’t ask questions. I kept trying to work and pursue my careers, but in 2012 I had to accept a medical discharge from the Army. I ended up on light duty at the Mint, and then had to retire from that too in 2014. I was lucky enough to retire with pensions and disability, and my care was 100 percent covered by the VA. But I had to give up pretty much everything I wanted to do. On top of that, my marriage had ended from a combination of the stress caused by 9/11, my illness, and being remobilized in the Reserves. I was blessed to remarry in 2015, and my new wife was incredibly supportive, going to all my doctor’s appointments with me, looking after me, and doing the heavy lifting around the house that I couldn’t do anymore. But for a while, I was kind of drifting and complacent, taking the meds my doctors prescribed but not really asking what was next. That changed in early 2019. By then, my wife and I had moved to Florida. I was going to a new pulmonologist, and they were doing a whole workup on me, including a chest x-ray and CT scan. It was pretty routine stuff, so I just went on my own; looking back, I regret not having her there with me. My 4 new pulmonologist said he had good news and bad: the good news was I had no sign of active sarcoid. The bad news was he saw pulmonary fibrosis, which was affecting my breathing capacity. Seventeen years after my sarcoidosis diagnosis, I had a new one: chronic interstitial lung disease (ILD) with worsening fibrosis. When I first heard “fibrosis,” I didn’t understand what this meant for me or my future; it was only when I got home and started doing my research that I realized how serious it was. I was disappointed that despite all the hard work I’d done, I still had to deal with the fallout from my sarcoidosis. And I was surprised, too—I had no idea that chronic ILD with worsening fibrosis was something I might have to worry about later. If I had known, maybe I would have made some different decisions. Maybe I would have had different discussions with my doctors. Maybe I wouldn’t have been so complacent, and we’d have caught it earlier. But I didn’t dwell on the what-ifs, and I didn’t feel defeated. I had a lot to live for, like my wife, my children, and my grandchildren, and I wasn’t about to give up on them…or on me. Since my diagnosis, I’ve been taking a completely different approach to working with my doctors. I go in to see a pulmonologist every few months to get my CT scans, x-rays, and pulmonary function tests. When I go in for these appointments, I make sure I understand the test results and what my options are—and I make sure my wife is there to help me remember any questions I forget! I’m also a little less complacent when my doctors make recommendations for my care plan. I used to just go along with whatever 5 my doctors said. Now, I ask more questions so I fully understand what it is they are suggesting and can choose if it’s going to be the right decision for me. I also ask questions to make sure I understand how my disease is progressing, and I make sure that all my doctors are in the loop: my PCP, my pulmonologist, my cardiologist…even my eye doctor and dermatologist. They do a good job of making sure they’re not tripping over each other, but I’ve got to play a role in that, too. They’re busy and can’t always call each other, so I have to let them know how I’m doing. I can’t hold anything back from them. That’s why I keep a little diary of what I’m feeling, what my symptoms are, and what I’ve told each doctor so I can help them see when I’ve had different procedures, when I’ve had tests, and what medications I’m taking. It also helps keep me focused on any progression if I notice any increase in my shortness of breath or fatigue. I like that so many doctors now have patient portals; if I forget to write something down, I can hop online and get the information I need. Finally, I’ve also learned that I have to be honest with my doctors—and myself—about what my priorities are. A while back, I decided to look for a new pulmonologist. Not because my last one was bad, but I just didn’t get the feeling that he shared my priorities and outlook. Today, I follow my care plan diligently and keep working to see improvement in my numbers, even if it’s small. While I’m okay physically, emotionally I struggle with how my disease has limited my activities. I’m only  years old, but there’s a lot of things I want to do that I can’t do because I still get short of breath and feel winded. And unfortunately, some 6 of my medications leave me feeling tired. I miss working and find myself getting cabin fever a lot, so I try to keep myself busy by volunteering with the VA. One of the things I can do is drive veterans to and from their appointments. When I meet some of our older veterans and see some of the challenges they’re fighting through now—as well as the challenges they’ve already fought through in their lives—it gives me a lot of strength and makes me want to fight even harder. So, that’s what I’m going to do, and I feel lucky that I’m doing it as well as I am. I may not be able to work, but I feel good enough to get up in the morning and do everyday things without feeling restricted. I’m still able to travel and see my children and grandkids up and down the East Coast, and that’s good enough for me. I also enjoy spending time with my wife, growing in my faith—though I think my wife would like me to grow it a little bit more!—and reading about other patients’ experiences online and looking for positive life lessons that I can apply to my own life. But it’s got to be positive—I’m not here for other people’s drama! And your patients aren’t, either. Please encourage your patients to not be complacent or settle for “good enough.” They’ll listen to you; you’re their doctor.
Sarcoidosis Patient Advocate
I am Proudly Venezuelan, 42 years old, physician, graduated from Medical School at the Universidad De Los Andes in Mérida, Venezuela(2006). I think my story began almost 13 years ago, six months after my only son was born, December 2008 (although now I am more convinced that this is not the true beginning of this story). .In June 2009 I was diagnosed with hydrocephalus of unknown origin after putting me a ventriculoperitoneal shunt I started to have a long list of new signs and symptoms [fevers of unknown origin, recurrent infections, enlarged liver, spleen and pancreas, hematological disorders, breathing problems (shortest of breath, recurrent pneumonia) , skin problems, joint pain/inflammation, fatigue, etc) On March 2015 we moved to USA, it was here, where we were able to confirmed the diagnosis of sarcoidosis(after many tests, biopsies full of granulomas, etc). After the diagnosis, I refused to accept the traditional medical treatment options doctors could offer me at that point (a difficult situation, when you are a physician and you are married to a pharmacist), so I decided to visit a naturopathic doctor. Three months after starting this alternative treatment recommended by my Naturopathic doctor #MeganSchlick at @Adventhealthkc (Paleo diet, exercises and various supplements). Now my NEW LIFESTYLE, the fevers disappeared and the other symptoms have improved wonderfully.. Of course I have moments when symptoms flare-up, especially before and during menstruation (periods)..That is why I started thinking hormonal changes have some kind of influence on my signs and symptoms flare-up. If we go a little further back in this story, I had my first menstruation(period) at the age of 16 and few months later I was diagnosed with asthma, mainly triggered by cold (controlled with inhaled steroids). Now I am more convinced, that supposed "asthma", was one of the symptom of sarcoidosis. .For all these reasons, every day I am more convinced that hormonal changes have an important factor in sarcoidosis(at least in my case). .As a doctor and patient suffering from this disease; I keep studying and researching on this rare disease, adding and ordering pieces in this puzzle!. .Let's keep working together to find a cure for sarcoidosis, but in the meantime, I will continue with my paleo lifestyle and sharing with my sarcoidosis community, all the things are helping me, in this battle against Sarcoidosis.