Blog Dec. 21/18 - Merry Christmas, Happy Holidays, Happy New Year
I love Coke! But my kidney function (CKD) is very low; after many VHL-related procedures to remove kidney RCC tumours over 23 years, I only have about ½ left. My doctors and dietician are telling me to eliminate colas and anything high in Potassium, Phosphate and Sodium to prolong their functioning (till the end). I’m sure a lot of VHL people with kidney problems are in a similar boat. (I know there are other dietary changes for other VHL areas)
So I thought of sharing my personal fav’s list of “approved” pops. They’re also narrowed down by availability in my grocery stores. To see a full list click here to see Table 1 in this research article.
Henry's fav list of
Pops with < 1 mg Potassium and <1 mg Phosphate:
-Root Beer, 174 Calories, 45 Sodium (mg)
-Cream Soda, 174 Cal, 45 Sod
Barq’s Root Beer, 166 Cal, 66 Sod
-Club Soda, 90 Cal, 90 Sod
-Ginger Ale, 140 Cal
Mountain Dew, 110 Cal, 75 Sod
Ginger Ale 180 Cal
Club Soda, 105 Sodium
Mug Cream Soda, 180 Cal
(Mug Root Beer = 170 Cal, 15 Pot, 1 Pho)
Sprite 144 Cal
-Original Citrus, Black Cherry, Peach Citrus = > 1 Cal each
Nestea Lemon Sweet, 129 Cal
(this is another similar list, but it has sodium levels)
December 2015 and
Unique Visits 2,987
First Time Visits 2,136
Returning Visits 851
Traffic by Province:
Ways to give
Support (Social-Emotional & Information Links)
39% Direct address or bookmark
34% Websites (e.g. Facebook, national/international directories and databases)
27% Search Referrals (mostly Google)
Traffic by country:
1/36,000 is about 1000 people with VHL in Canada
VHL Canada is a small non-profit started by a patient and registered in 2016
Details: click photos
Blog Post Dec. 6/18
The weekly online drop-in peer group chat goes through various stages of being relevant or helpful to Canadians dealing with VHL:
In the beginning*
Participants are sometimes very unsure or nervous about what the group is all about…
Less unsure but still checking it out
Participants will often keep attending the group to see what else it might have to offer…
Participants at this stage are regular members… there will probably be a core group
This may not be for me right now
Due to various reasons (e.g. upcoming operation), some participants will no longer need or want to continue with a group at the moment. However, it is important to keep the group going even with very few members…
*Group Stages full document here
For more information go to our webpage or contact Henry
It doesn't cost you a penny more to shop through this site. Each online purchase you make through www.shopandshare.ca automatically generates a donation for VHL Canada.
230+ Popular Online Stores to choose from - list
For information on how we would use donation money - see Ways to give page
Patient, Volunteer, Chair
Blog: Nov. 10/18
Social-emotional support for peers - patients and family members - from Canada
Nov.1/17 to Oct. 31/18*
5 individual contacts, 3 hours per month
*12 month totals
58 individual contacts, 32 hours
35 groups, 67 hours, 62 people
We follow a Peer Support model that does not hold bio-medical intervention or treatment at the forefront. Peer Support “is the emotional, informational, and practical support from and for people with lived experiences, to cultivate mutual empowerment. Peer support initiatives are run by and for the participants..."
SOCIAL-EMOTIONAL - Group and Individual
INFORMATIONAL – Blog, Facebook Public and Peer Community Pages, Website, and Archive
PRACTICAL - More examples will follow
A permanent trained Peer Support Volunteer (PSV) moderates groups and provides individual support., and is responsible for up-to-date informational (psychosocial) resources.
Blog: October 29, 2018
From a patient’s advice on how to help those living with VHL*
"many healthcare professionals may not have heard of VHL syndrome; it is important for them to do some research and be prepared to listen to the patient, who will know more about the disease and specifically how it affects them" [emphasis added by me]
“Patients are likely to feel that they lack control over their situation, both currently and in the future. Providing person-centred psychoeducation and facilitating the development [and support] of an ‘expert patient’ role may increase self-efficacy...”
*Von Hippel-Lindau syndrome: a literature review and clinical considerations (European Journal of Palliative Care · September 2017)
Wednesday online group drop-ins 7:30-8:30 pm EST*
Schedule a half-hour every week for yourself . Watch a synced guided video with others, who are also online, anywhere in the country. This can be your online group time for practicing relaxation, mindful yoga, or another similar activity.
Just click a link that will take you to a “theatre” and you can be anonymous if you like. Afterwards we’ll have options like a chat or a repeat of the video etc.
Last week we featured a 20-minute mindful yoga video - all in standing position. And we'll keep using the same video sequence starting this week Wed 17th.*
Toronto Wed, Oct 17, 2018 at 7:30 pm EDT
Vancouver Wed, Oct 17, 2018 at 4:30 pm PDT
Calgary Wed, Oct 17, 2018 at 5:30 pm MDT
Edmonton Wed, Oct 17, 2018 at 5:30 pm MDT
Saskatoon Wed, Oct 17, 2018 at 5:30 pm CST
Winnipeg Wed, Oct 17, 2018 at 6:30 pm CDT
Montréal Wed, Oct 17, 2018 at 7:30 pm EDT
Fredericton Wed, Oct 17, 2018 at 8:30 pm ADT
Halifax Wed, Oct 17, 2018 at 8:30 pm ADT
Cape Breton Wed, Oct 17, 2018 at 8:30 pm ADT
Charlottetown Wed, Oct 17, 2018 at 8:30 pm ADT
St. John's Wed, Oct 17, 2018 at 9:00 pm NDT
*Guided by Dr. Lynn Rossy, Health Psychologist for University of Missouri's wellness program. There are other versions (e.g. chair, audio-only) here.
" Even if you are very experienced in yoga, please be sure to read Mindful Yoga before your first time doing this practice. Mindful Yoga is different than many traditional yoga practices in that there is less of a focus on the exact posture achieved and more focus on body/mind awareness."
Come by every Wednesday - arrive a few minutes earlier...
If you're interested or have questions just reply.
Then I'll just send you the link for the syncronized guided video, our "viewing room", for Wednesday's 7:30pm EST.
In the meantime or if you can't make the scheduled time, here is the youtube link
List taken from "Patients & Family Members" webpage: "For example, maybe you’re...
You may have already seen this and identify with something on this list. It doesn't cover everything - it's just what comes to mind when I think about the people from Facebook, other forums, emails, and phone calls.
🍁 Only 4 days to go! 🍁 Sponsor me 🍁 VHL Support in Canada, Awareness, and Cure
Blog Oct.11/18: Wednesday's group chats 7:30-8:30 pm EST...
will start to include a video that we can all watch at the same time and then comment on afterwards.
You just have to click a Watch2Gether chat room link that'll take you to a kind of online theatre.
For example, last night there was a 3 minute portion of an interview with Jon Kabat-Zinn (and Oprah) about his "mindful" morning ritual*. Kabat-Zinn is the the founder of Mindfulness-Based Stress Reduction (MBSR). SEE SCREENSHOT
ALSO we watched, and took part in, a 25 minute chair yoga routine (UHN Toronto Rehab)*. SEE SCREENSHOT
"Clinical trials are an important part of the research spectrum. The idea for a clinical trial often starts in the lab..."
“Pazopanib could be considered in patients with von Hippel-Lindau disease and growing lesions who might require surgical resection in the near future, or to reduce tumor size in patients with unresectable lesions…”
"shows promise in rare cancer syndrome..."
"encouraging preliminary activity..."