I was diagnosed with VHL at a young age. I had a very traumatic experience with my first tumor on my pancreas when I was 12.
Since then I've also had renal cell carcinoma removed when I was 17 and just very recently had a pheochromocytoma removed! [26 years old; her mom and grandmother also have VHL; and a Registered nurse in an emergency department)
... Big changes for me in 5 years since I first heard the words VHL. But I am lucky I have the most incredible husband in the world; he and my wild little boy make my life full and happy even while I’m fighting this battle ...
Send your story or give feedback
Email or post here
Donate or get more info
Hi everyone. I’m 38 years old and live in Ottawa. Sister and I got the gene from our father, my 7 year old son carries as well...
This is wonderful time to have a group in Canada. My son and step daughter, 25, both have VHL. My son is 10 so I've joined on his behalf
(2015) I had my first tumour in spine about 17 years ago and last Jan I had a tumor in my cerebellum. I don’t want to make this post long but my mom and her mom and sister also were clinically diagnosed with VHL: my mother brain tumour and tumour in eyes. Although none of these ladies are with us anymore VHL was just a word to us a disease that at the time only females got... My 19 year old and my two year old boy have VHL my other five children do not I lost a child also and not sure if ...
“What do you do to stay positive? What helps? From the people that I know and admire, including VHL patients and families in our VHL Canada Peer Community (e.g. Facebook), I know that to "be positive" can seem cliche, but it's important to be realistic and balanced about life in general.
It’s hard sometimes. I try to exercise, see family and friends. I try to constantly remind myself how far I have come, how strong I am. I have great family/ friends. I tell myself I’m still walking and talking. Walking may be hard and slow at times but I’m doing it. Lol
*Developing a more positive mindset is one strategy from NIH's Emotional Wellness Toolkit (evidence-based tips for living well and improving your health)
Please add your comments, examples, questions, etc.
Having a health condition, like VHL, can be discouraging, so falling into low or depressed mood is a risk. Low or depressed mood often goes along with a negative way of thinking, also known as depressive thinking.
Depressive Thoughts are unfair and unrealistic. They are distorted – inaccurate reflections of yourself and the world around you… DT affects how you handle your health condition.
Identify Depressive Thoughts
Recognize How Your Depressive Thoughts Trigger Low Mood
Challenge Depressive Thoughts and Replace Them with Realistic Ones
Practice Realistic Thinking
For more explanation and health-related examples, get pdf - download or online versions here:
Positive Coping with Health Conditions, A Self-Care Workbook is a self-care manual authored by scientist-practitioners with expertise in issues relating to coping with health conditions. This manual is designed for individuals who deal with health conditions, including patients, physicians, psychologists, nurses, rehabilitation professionals and researchers.
Authors worked with the Consortium for Organizational Mental Healthcare (COMH), Faculty of Health Sciences, Simon Fraser University, with funding support from the Vancouver Coastal Health Authority, Province of British Columbia, Canada.
Share any feedback or questions with peers in our Facebook group discussion. Also, you can comment on the Blog page or send a message to the Peer Support Volunteer (me).
Leith, a grade six French Immersion student at John Ross Junior Public School, wrote a letter, about his awesome project, to the Canadian Organization for Rare Disorders (CORD)...
Link to original post and Facebook Page
To whom it may concern,
I was assigned a project to teach my class about a charity that touched my heart and was important to me. I chose [CORD] because my mom... has a rare disorder called aHus and I do not want anyone to suffer like my mom did. For my lesson I talked about different types of rare disorders such as aHus, hemophilia, Albinism, and Huntington's. I also did an activity that was a game of jepordy all about [CORD]. Thank you for inspiring me and keep doing what you're doing.
Leona’s VHL Story, Calgary, Alberta
“… it takes an emotional toll on all involved”
Video Link from VHL Alliance 10 minutes
A Visit to Remember, Ontario
“My name is Connie H. and I’m a von Hippel-Lindau Warrior”
Blog Post Link from VHL Alliance
Henry, VHL patient and volunteer, Toronto, Ontario
Annual Holiday Fundraiser for VHL:
2016 Article Link
2015 Article Link
2014 Article Link
Isolated by their child’s rare illness, parents find connection online
July 9, 2018 Globe and Mail
She typed “Coffin-Siris syndrome” into Facebook’s search bar, a term that had eluded her since the birth of her daughter nearly eight years ago.…
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages…
Canadian Organization of Rare Disorders (CORD)
Canada's national network for organizations representing all those with rare disorders
University of Manitoba
Winnipeg Children’s Hospital
French boy's rare disease fight leads family to Canada
June 14, 2018 CTV News
At birth, doctors gave Julien Ferrer only a slim chance of surviving a rare childhood bone disease…
Montreal-based Enobia Pharma has developed ENB-0040, a drug that may help patients overcome the effects of hypophosphatasia...
Victoria BC to St John's NL
Dave Proctor - Fueled by the Rare Disease Community
On 2018 June 27 I will embark on a run starting in Victoria and ending in St John's 66 days later. This record breaking run will carry me the entire 7,200km across Canada… My son Sam struggles daily with a rare disease called Relapsing Encephalopathy with Cerebellar Ataxia...
Just one recent news story that I identify with as a VHL patient who also tries to be hopeful (and helpful) in personal and work life.
I've signed up for Google Alerts for “VHL” and “rare diseases” and follow other Facebook pages and websites e.g. VHL Alliance, Canadian Organization for Rare Disorders (CORD), Canadian Association of Psychosocial Oncology (CAPO) Digest email list, etc. - Henry
In the news...
Grafton MA, USA– Festival of Hope, a fundraising event in honor of Julie Flynn, guidance counselor who lost her battle with Von Hippel-Lindau (VHL) Syndrome at the end of March of this year. Flynn was first diagnosed at the age of 13 and lost an eye as a result. Throughout her life, she endured many surgeries and chemotherapy…
I think living with VHL has made me a more compassionate, empathetic and hopeful person. This is an added asset... Link to article