We are incredibly excited to share Eric T. Majusiak’s story with you, as the first of our Still’s disease patient profiles. We asked Eric to be our first profile, because his nonprofit does such great work to spread awareness about HLH and Still’s disease.
If you’re interested in signing up to share your story with us, send us an email at SDthe411@gmail.com. We’re also happy to share your story anonymously if preferred.
by Eric T. Majusiak
In August 2012, with the help of my wife, I launched EricsJourney.org to share my story so others didn’t have to feel alone like I did. Since being diagnosed I have dedicated my life to spreading the word about HLH in Adults and Still’s Disease.
In 2013, I did my best to walk in the Liam’s Lighthouse Foundation 5K to Fight Histio in NYC to raise awareness for both diseases. It was a difficult struggle for many years, but in 2017 I was finally able to run/jog the entire race. In 2018, I found out about a young mom named Lindsey who lost her battle to HLH & Still’s disease in my state. It broke me to pieces and encouraged me to continue the fight for those who cannot.
In 2019, my wife and I were invited to speak at the opening ceremony of the Zakithi Nkosi Clinical Hematology Centre of Excellence in Johannesburg South Africa. There I met another HLH/Still’s patient named Nicky, who I am proud to call my friend. I was the first person she ever met in person with the same diseases. I was also featured in a book on HLH patients called There Is Hope Here: Stories of a Rare Blood Disorder by Kelly J. McCleary.
In November 2019, I officially opened Eric’s Journey Foundation(EJF). The mission of EJF is to lead, inspire and support individuals around the world impacted by rare diseases.I am currently working with my board and volunteers to give back to all of those who helped save my life at Temple Health. Even though it is 8 years later, it is a place that still feels like home when I walk through the doors.
I hope my story will continue to reach people all over the world and they will join me on this journey to help others.
|Name:||Eric T. Majusiak|
|Year of birth:||1984|
Still’s disease Onset
|Age at Still’s disease onset:||27|
|Name of disease at onset of diagnosis (SJIA, AOSD etc.):||Adult Onset Still’s Disease/Still’s Disease|
|What was your life like before Still’s disease?||I was relatively active. I spent a lot of time outdoors bass fishing, hunting and kayaking.|
Disease onset story
I married my girlfriend Amanda of 10 years on 9/10/11. Just 4 months later at the end of January 2012, I became very I’ll in a matter of days. My elbows, knees and wrists became very sore. I had never felt pain that intense even after breaking my nose in baseball as a teen. I was in so much pain, I was afraid to get up off the couch. I could barely move. I had a mild fever at that time. I went to the local hospital where they ran some tests and the last thing I remember there was that I had trouble breathing even though they said my oxygen was good.
10 days after being admitted to the ER my wife transferred me to Temple Health in Philadelphia where I fought for my life sedated, medically paralyzed, and ended up on ventilator support and ECMO for two months.
Upon waking up, I had learned I was diagnosed with not 1, but two rare diseases – Still’s Disease, a rare form of severe arthritis and HLH – Hemophagocytic Lymphohistiocytosis, a rare blood disease which affects the immune system and is treated with high dose steroids and chemotherapy and other medications. Oftentimes, patients will need a bone marrow transplant.
I had never been sick in my life and I couldn’t understand what was going on from all the medications. I came to know a machine called ECMO, similar to dialysis for your lungs, saved my life while doctors vigorously fought for answers. At that time, I was the longest surviving person who received ECMO support who did not receive a lung transplant with a total of 34 days at Temple University Hospital in Philadelphia, Pennsylvania. I could not talk or lift a muscle in my body when I awoke and lost over 100 lbs and all of my strength. I had to learn how to breath, speak, eat and walk again.
After 99 days, I finally came home on May 11th 2012. It is still sometimes confusing and unbelievable that this could happen to me.
|How long after diagnosis did it take you to get a diagnosis?||I was diagnosed with HLH in March by the hematologist who suspected stills as the trigger. In April the rheumatologist agreed it was still’s disease.|
Your Life Today
|How has your disease changed since onset and/or diagnosis?||I had several flare ups that would be debilitating but were very mild compared to the initial flare up in January 2012. Today, I struggle with mild inflammation and joint pain all over. It is maintained pretty well by the same medications I have been on since 2012. I often struggle with short term memory loss and memory recall. I am forced to use many tools, tips and tricks to maintain a “normal” life.|
|What is a day like in your shoes as a Still’s disease patient?||While each day is different, many days I struggle to get out of bed as my body is very stiff early in the mornings. I often find myself exhausted by the end of the work day. It doesn’t leave me with a lot of energy for family and personal time.|
|If you could go back in time to when you were diagnosed and give yourself some advice, what would you say?||Be more independent. It has been difficult for many around me to understand my condition and needs. It often becomes too much to handle for them and they end up disappearing from my life. Trust in yourself that you will find others like you and they will even be kinder than some of your family. They will help you become the man you are today.|
|What is one thing you wish doctors knew about Still’s disease?||The pain and the fatigue are real and are not a figment of your imagination.|
Treatment and Medications
|Past Medications||Kineret, Steroids|
|Current Medications||Humira, Methotrexate|
|Any comments on your treatment?||Insurance is difficult to deal with. It takes up a lot of time and what little energy I have in me.|