SARCOIDOSIS STORIES
Your voice is important
Everyone has a different experience with sarcoidosis and so it is important to highlight and share as many people’s journey with sarcoidosis as possible.
Want to share your experience of sarcoidosis with others?
SarcoidosisUK are collecting patient stories from sarcoidosis patients and their families. Perhaps you have a positive, and uplifting story to tell. Perhaps you want to share some more difficult experiences for others to learn from. Whatever your story, we would like to hear from you so that other patients can be inspired, educated or comforted by your experience. To submit your story, click the button below or email info@sarcoidosisuk.org.
Stories from our community
Cathy
“My biggest frustration is the lack of understanding both in life generally but particularly in the medical profession of this disease and I am grateful for all the charity does to promote awareness.”
Martin
“One day I was marrying Sarah, surrounded by the people we loved most. The next working day I was in hospital beginning treatment for a systemic disease that had reached my heart. The start of married life became consultants, cannulas, steroids, monitoring, and cancelled plans.”
Amanda
“The biggest challenges I have faced are not being able to do the things I used to love like Zumba and going out on an evening and some days the fatigue takes over, and I can barely keep my eyes open.”
Jean
” I get to talk to medical students, student nurses, student dentists, and student optometrists. I give them a thorough introduction to sarcoidosis and a florid re-telling of my near-death experience. They go away excited to look it up!”
Debbie
“Balancing hospital appointments, biopsies, steroid treatment, and profound fatigue with exam study was a huge challenge – and it built resilience in me.”
Gregory
“Professor Donnelly believed that given my symptoms, and lack of medical intervention, I was weeks from slipping into a coma and passing away. He believed the constant calls for intervention from Claire were the sole reason that I survived as long as I had.”
Thomas
“My main problem was severe fatigue. Over the course of 12 years I needed almost continuous drug treatment.“
Roy
“The slow diagnosis process was tough. Waiting for blood test and biopsy results can let all sorts of things go through the mind!”
Nick
“When I was first diagnosed I really did struggle and I went downhill mentally. But my specialist told me to keep running and to listen to my body.”
Rory
“My artworks use phrases I’ve had said to me over the last few years, by family, friends, and healthcare professionals. Mostly people are being well meaning, but sometimes the things they say make me laugh, cringe, or curse under my breath. I’ve used these to inspire my images, using a mixture of photographs and drawings to express how I felt about what was said to me.”
Nicky Hughes
“It has been difficult to process and accept at times that this has happened to me and that I may have it for the rest of my life. The loss of the life I had before and learning to deal with the new me has been hard and I feel my confidence and self esteem have taken a big hit. The pain, lack of sleep and fatigue gets me down at times but I am much better than I was 6 months ago, so I’m grateful to be getting back to something a bit more normal”
Dawn Clements
“The experience left me physically and emotionally shattered and made me aware of the lack of knowledge around sarcoidosis. I realised I needed to become an expert in my own condition, which was reinforced and recognised when I made a formal complaint to my GP.”
Rachel Summers
“I now work on the Helpline alongside Jo and Jenny, so that I can support others going through the challenges of sarcoidosis. I find that I can share my experiences to encourage others and help make sure people with sarcoidosis do not feel so alone with it being a rare disease”
Gwyon Jenkins
“In the past I have taken so many things for granted – I no longer do this.”
Anton O’Hara
“I am very proud of our NHS service and the consultants who provided me with such great care and gave me a second chance at life.”
Peter Devonald
“Alone this disease is terrifying – together we have strength and power.”
Dorothea Howard
“I would tell myself to become my own advocate, as well as taking charge of my illness regarding taking the necessary steps to find out as much research as possible. Knowledge is power!”
John Calland
“Keeping the condition private for many years has been challenging. I am now at the stage that I encounter extreme tiredness due to new medication, this has also spread the awareness of my condition with my colleagues.”
Craig Tooley
“I think it’s time to get you on the transplant list. I can’t to this day explain how I felt after I got out the hospital I just froze I was alone, scared and didn’t know what to do.”
Daniela Cruz
For the Dandelion 250 Fundraising Challenge for Sarcoidosis Awareness Month 2023, Daniela Cruz’s daughter, Sara (age 15), wrote a story about living with sarcoidosis.
“Dandelions represent one of the most amazing people in the world. The sarcoidosis survivors. The people who brave through sarcoidosis every day of their lives.”
Rick Lavous
“Now we understand sarcoidosis a lot more we take every day as it comes, but I know my wife finds it hard as I am a proud man that never usually discusses his feelings, but I do now which I know helps us both.”
Laura Dutton
“I think the biggest impact has been on my children. My two sons were 11 and 13 when I was diagnosed. This was a difficult time for them since I was probably not able to give them the attention and energy they had previously had due to being ill and having a new baby.”
Lady Kondo
“Sometimes I win, sometimes I lose. But I am also learning to remind myself that my body is fighting very hard to keep me alive. Self- compassion is a new ingredient, that I had to inject in my daily routine.”
Cole Henry
Cole has created a graphic short story, ‘Sarc – an Autobiographical Fable’. The 4 page comic talks about his sarcoidosis diagnosis and how it affected him.
Juliet Coffer
“All I want to achieve, in the short time I have left, is for people all over the UK to know about this invisible disease which causes enormous physical, mental and emotional disability. Just because a person looks well, it doesn’t mean they are.”
Kemi Sulola
“For my family who were not used to dealing with a family member with a chronic illness it was a big shock and life changing for them. Their lives schedules had to revolve around my care and needs, which was also emotionally and physically taxing on them.”
Samantha
“I struggle with daily chest pains and I’m prone to fatigue; and when I say fatigue I don’t mean feeling tired, I mean exhausted and completely anchored.”