In honour of Rare Disease Day 2021, we wanted to highlight the wonderful patient stories that have been shared with us throughout the year. Rare Disease Day is all about having the patient voice heard and we believe that our guest blogs have beautifully captured our community’s rare truths, journey, triumphs and hopes for the future.
Read one or read them all. This is all of our story and it’s been a privilege sharing your journeys on our blog.
Happy Rare Disease Day! We’ll never stop fighting for you and the rare community.
With love, Findacure
Women’s Rare Experiences #IWD2020
“How will you help forge a gender equal world? Celebrate women’s achievement. Raise awareness against bias. Take action for equality.” (IWD.com, 2020)
The 2020 #EachforEqual campaign runs all year long and definitely hasn’t become less empowering since International Women’s Day on Sunday 8th of March. With all that we are currently facing, this may seem like a distant memory, but an equal world is an enabled world – especially at times like these. In this blog, we featured the stories of three women who are part of the rare disease community. Read it now!
Lucy’s Story: A Mothers Perspective
Lucy McKay grew up watching her mother grow a rare disease patient support group into a trail-blazing charity. Her eldest brother was affected by MPS II, which led her mother to found the MPS Society. Lucy grew up alongside the patient group and when she went to medical school she was surprised by how little attention rare diseases received. This is her story of becoming a mum. Read her story now!
Robyn’s journey: Inner resilience with PK deficiency
This blog is guest written by Robyn Silverton, a holistic therapist and trained physiotherapist who also has the rare condition of PK deficiency. PK deficiency is a hemolytic anaemia of which there are 1 in 200,000 patients worldwide. Robyn shares her story and what keeps her positive in the face of challenges associated with having a rare disease. Read her story now!
Huntington’s Disease: Living Life in HD
This blog is written by Ashley Clarke. Ashley takes us back to when her dad was first diagnosed with Huntington’s Disease (HD), and reflects on her journey from daughter and carer to HD activist and lifestyle blogger. See how she’s living life in HD now!
My Lockdown Journey
This blog is written by Heather Delaney, a Trustee and Secretary at Fibrous Dysplasia Support Society UK (FDSSUK).
Heather was diagnosed with Fibrous Dysplasia at 10 years old. She has had multiple operations throughout her life and manages her own chronic pain. She also has problems with her thyroid, fatigue and spine. Heather joined FDSSUK as a member around 10 years ago, hoping to learn more about the disease and meet other patients. Heather now volunteers for FDSSUK and is the secretary. She is very passionate about raising awareness of the disease, and enjoys being part of a community that allows her to interact with other patients and carers.
Fibrous Dysplasia is a rare bone disease, which weakens bones and causes deformity and fractures. It can affect any number of bones in the body, and be diagnosed in early childhood or in adulthood. It is caused by a defective gene, but it is not inherited. Fibrous Dysplasia can also be associated with cafe au lait skin pigmentation and other endocrine issues, which is part of a wider condition known as McCune Albright Syndrome. There is no cure for the condition and the severity of the disease differs from patient to patient. Read her story now!
Born to serve: from Desert Storm to rare disease warrior
This blog is written by Dan Shockley, a retired U.S Navy Veteran who served in Operations Desert Storm, Endurance and Iraqi Freedom. In 2012, at the age of 51, Dan received a diagnosis of a rare gene mutation, attenuated familial adenomatous polyposis (AFAP). This life-changing event spurred Dan on to become a rare disease expert and colon-cancer ambassador, sharing his experiences in an effort to encourage and inspire fellow rare disease patients. Read his story now!
A parent’s diagnostic odyssey: Braving CRMO as a mother and nurse
This blog is written by Dawn Baker, the mother of Joseph and Hannah Baker who you know from our #RareMinds: Youth Campaign on Facebook! Dawn has been brave enough to share her inner thoughts, worries and hopes as she continues to navigate Joseph’s diagnostic odyssey with CRMO beside him. You’ve heard how the rare disease CRMO affects her children, so now it’s time you heard how CRMO affects their mother, Dawn, as both a mom and nurse living in Texas. Read her story now!
How to live with a chronic illness in five easy steps
This blog was guest written for Findacure by Jessie Ace. Jessie was diagnosed with Multiple Sclerosis aged 22 and has been an active advocate for individuals with chronic illness since. She is a writer, public speaker, illustrator and host of the chronic illness podcast ‘DISabled to ENabled’ where she interviews everyone from celebrities to patient advocates and charities. She is founder of the empowering ENabled Warrior tribe, and her blog jessieace.com where she shares tips and advice for living your best life with chronic illness. She’s worked with the National MS Society, MS Trust, MS Society, shift.ms, and MS-UK and been featured on CNN, Huffington Post, Yahoo, and The Mighty among others. She provides help and advice for people living with chronic health conditions after her own experiences of being diagnosed with MS aged just 22-years-old. She’s on a mission to fill the internet with positivity after her doctor told her to ‘go home and google’ her condition finding every scary story going. Jessie is the author of the ENabled Warrior Symptom Tracker book which helps you manage multiple conditions, medications, spot symptom patterns, prioritize your energy, achieve your goals, and accurately keep symptom records for your doctor. Read her story!
#RareMinds: Youth Mental Health Awareness Campaign
Youth Mental Health Awareness Day took place on the 7th September 2020, and in support, the Findacure team launched the #RareMinds: Youth Campaign. This campaign looked to highlight some unheard voices in our rare disease community with a focus on teens and young adults. Read their stories now!
WARNING: This blog contains references to suicide, which some readers may find distressing.
Meet Rare Youth Revolution’s Daisy Marriott!
This blog is an interview between Findacure and RARE Youth Revolution’s Daisy Marriott! Daisy works for RARE Revolution Magazine as a Communications Assistant and is the Youth Editor of RARE Youth Revolution.
Get to know more about Daisy and the RARE Youth Revolution now and get in touch with her to express your interest in joining their cause as a young rare disease advocate and ambassador!
The power of collaboration: How one patient group partnered with medical researchers to find a treatment for a rare cancer
This blog was written by Jo Williamson, Chairman of The Phaeo And Para Cancer Charity. His son, James, illustrates his family’s story through beautiful comic strips, which walk you through his family’s journey of being diagnosed with a rare genetic form of cancer that sadly took the life of his mum and Jo’s wife.
Their story highlights the power of collaboration between individuals, patient groups and medical professionals when looking to create a new innovative treatment for a rare condition. Findacure was lucky enough to play a small part in The Phaeo And Para Cancer Charity’s story, so we couldn’t be happier to share Jo’s story with you now. Read their story now!