Patient Stories
Voices of ECD
Writings about Members and the Organization
Members of the ECD Global Alliance are dedicated to helping raise awareness of Erdheim-Chester Disease. The following links provide access to news articles and videos about ECD patients and their families. If you would like to share a printed or televised story about ECD, please contact us about the publication to be included here.
Please note that there is great appreciation for all articles and information shared about ECD at the following sites and within the associated articles. However, at times some of the facts concerning ECD can be misconstrued. Please be aware some information about ECD in some articles may not be scientifically correct.
A rare disease patient shares her fight to find the solution she desperately needed.
By Hiba Tohmé
My name is Hiba Tohmé, a 45-year-old young woman, mother of a 19-year-old boy. I led a ...
When hope was in short supply, this Erdheim-Chester disease patient found a medical team that went above and beyond, bringing him the hope he needed to gain a life he could embrace.
By Adam ...
Joe Lofaro raises awareness for Rare Disease Day in his community by sharing his story of battling this rare disease, no matter the obstacles.
Rare Disease Day raises awareness of disorders that affect very few of us. An ECD patient in Washington shares her story of fighting to save her own life.
Former sports journalist Joe Lofaro has little memory of Oct. 23, 2015, when his son Daniel loaded him into a car at his Martin, Tennessee, home and said, ‘Come on, Dad, we’re going for a ride.”
What one UK family faced with Erdheim-Chester Disease.
By Chesnee Green
September 13, 2018
Erdheim-Chester Disease (ECD) patients are fighting a daily battle with their mental and ...
Joe along with 50 other friends, family, and community members, all wearing the ECD Awareness team shirts, took the opportunity to raise a great deal of awareness by informing all those curious ...
For many, fall time means pumpkin spice and sweaters, for others it’s the pigskin and gridiron: Football!
Written by an ECD family with the intention to raise awareness. “Special thanks to Dr. Roei Mazor for his invaluable contributions to this article for its medical accuracy, and for his ...
Erdheim-Chester disease is not the same for all patients. By Tina Koslosky
An Erdheim-Chester Disease family reports on the state of healthcare in a large region of Italy. By Mariangela Melino
Losing her husband to Erdheim-Chester disease does not stop this caregiver from having hope for others still fighting. By Maria Assunta Di Pietro
She had always wanted to be a mother, so it was a dream come true. On the other hand, with all of her health issues how would it ever work.
…after ten years of “What is going on, and I really am not a whiny woman,” I was diagnosed with Erdheim-Chester Disease.
Gerry Gallick shares his journey to an ECD diagnosis and how he has coped with the new normal.
I did every test under the sun to find out what it wasn’t. Finally, an answer; Erdheim-Chester Disease (ECD).
“I studied everything I could about ECD and thought I had a death sentence coming very soon.” – by Hugh Welborn.
The diagnosis of a rare disease is punctuated by the gift of life, from an ECD spouse perspective.
An Erdheim-Chester disease patient tells her hope-filled story for Rare Disease Day 2021.
Family and friends gather on Father’s Day to reach new heights for research on rare cancer.
Time is of the essence with this disease and it had been destroying my body unknowingly for 14 years. – by Patty Jackson
At the very young age of six years, old Noah began showing signs of illness. After 12 long years of not knowing the cause of these lesions and his pain, the diagnosis of ECD finally came. ...
My family gives me a lot of emotional support with ECD and the accommodations I need. My response to treatment brings me a lot of hope, as when I first received Zelboraf, I felt immediately ...
Support of my family who will do anything to have a positive outcome. Finding something to look forward to, i.e., Alaska cruise with grandkids in July. Results from next PET scan (April).
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My family is extremely supportive. I have good neighbours where I live and I am hopeful that we can stay on the farm for several more years. My farm animals and the daily farm care routine keep ...
Hope springs from the dedication of doctors tackling my condition and the collaborative spirit among my medical team, all committed to understanding ECD. Their efforts, coupled with positive ...
The kindness of others has made a huge difference in my life. From the doctors who continue with research, give up their time to come and share at these meetings, the ECDGA providing answers and ...
When I was diagnosed, I was told that as advanced as I was I had approximately 48 months to live. I feel very hopeful about the medication I am on, the support from family, friends, church, the ...
I remain hopeful in God who gives me strength. I’m thankful for the amazing people I’ve met on this journey, and I’m thankful for every memory I’ve created with my son and loved ones.
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ECD Global Alliance community member writes on his involvement in the Dabrafenib and Trametinib therapeutic trial at the National Institutes of Health.
From April 23 – 30, volunteers from around the world were acknowledged for their contributions to the ECD community.
A Chinese ECD patient and ECDGA volunteer tell about his journey with this rare illness.
An inspiring story of a 15-year-old diagnosed with ultra-rare blood cancer found predominately in adults.
ECD survivor Dawn Smith shares her journey living with this disease.
“I, Caityln Walch, think ECD is very important. My grandpa was diagnosed with ECD about 2 years ago. That didn’t stop him though. Ever since I was born my grandpa took care of me so I will ...
A teenager suffering from Erdheim-Chester Disease gets to spend a day with military pilots and aircraft and pilot an aircraft simulator in his own personalized flight suit.
Canadian patient tells about his journey with ECD and of hopes for a better healthcare system.
“Despite the change that sickness has brought into Janet’s life, she welcomes each new day with open arms, and keeps the things that truly matter to her close by. This passage was written based ...
Hope, faith, and community come together for this Erdheim-Chester Disease patient to strengthen his fight against this debilitating disease.
ECD Global Alliance president and founder, Kathy Brewer, spoke to a local club about the progress of the local non-profit.
Bob Rodgers and his wife, Phyllis, are hosting the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 to raise funds and awareness of the rare disease. Bob was diagnosed with the rare ...
This is Erdheim-Chester Disease Awareness Week, and Leslie and her husband, Rich, are not only calling attention to the medical condition but raising money for research.
A fundraiser was held in honor of former Irondequoit and St. John Fisher College basketball standout, Gurnal Jones, who is battling a rare disease called Erdheim-Chester.
An ECD patient is interviewed and quoted in Popular Mechanics on how vemurafenib has changed her life.
A video from Memorial Sloan-Kettering Cancer Center in New York features an ECD patient, Rita, who is currently enrolled in the vemurafenib trial. Rita’s is a remarkable story that begins at the ...
TV interview of Kathy and Charles, two members of the ECD Global Alliance. The interview explains what motivates Kathy, President of the ECD Global Alliance, to continue searching for better ...
An article about Kit, an ECD patient, and her husband, Rich.
The daughter of an ECD patient has written and performed a song about her dad.
A news story from the Yorkshire Post about a doctor who has been diagnosed with Erdheim-Chester Disease. He discusses his experiences in living with ECD.
A news story about a young woman with Erdheim-Chester Disease (see story below) who met her future husband at a scuba dive event.
A local news story about a couple in Missouri who are learning to cope with Erdheim-Chester Disease.
An article about a man, with Erdheim-Chester Disease, who with his wife has started a nonprofit organization called, ‘Angel Hearts’. The organization is dedicated to helping families who are in ...
An inspirational first-person account from someone who is living with ECD.
*A version of the “A Man Blessed” story from above that does not require a subscription to the newspaper.
Describes the exercise program, and related benefits, of one ECD patient, a former doctor who lives in the UK.
A story about a young woman with Erdheim-Chester Disease who has been blinded by the disease. In spite of this, she learned to scuba dive.
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