Fibromuscular Dysplasia- Patient Experience, Struggles, and Living with FMD

Nov 11, 2011 Kari Ulrich, a patient with Fibromuscular Dysplasia (FMD), shares her story of struggles before and after being diagnosed with FMD in 2007. Kari reveals details of symptoms, treatments, lifestyle changes, living her life with FMD, and resources available for patients to obtain more information about this often misdiagnosed disease.

For more information on FMD visit FMD Chat, an international nonprofit organization that provides fibromuscular dysplasia support, education & advocacy for patients, family members, caregivers, and healthcare professionals.

 

Genetic Testing

By Kristen Knott

Written May 21, 2014

I have an appointment today to receive my genetic testing results. It has been 3 months since I provided the necessary blood work for the testing. The Genetic Counselor at Juravinski had informed me that results would likely take about four months. We discussed my family medical history and she explained that there were two genetic strains they could currently test for and they were BRCA-1 and BRCA-2. Both genes come with a higher propensity to get other forms of cancer and can be genetically passed to children. I have been preoccupied with this appointment since I received the call for booking. Does it mean something that the results are in early?

I desperately want the results to be negative for BRCA1 and BRCA2. I would hate to have to call family today and provide them with the bad news. Then the worry would begin for both themselves and their children. I feel sick thinking about this. I am tired of surgeries and blood work, yet I have already decided if I am indeed BRCA1 or BRCA2 positive I will have my ovaries removed. I want to avoid cancer in any form ever coming back in my [...] continue the story

Running On Empty

Production Company: Statically Indeterminate Productions Ltd.

Filmed and Edited by: Neil Webb

Running On Empty is a gut wrenching, yet heart-warming documentary short that tells the story of the lengths that one man will go to bring his six-year-old, quadriplegic son back to health.

This 22-minute documentary marks the second film from 24-year-old, award-winning filmmaker Neil Webb. In September 2010, Webb teamed up with Blaine Penny; a 36-year-old Calgarian who was attempting to run a 100-kilometer ultra-marathon over several mountain passes in Alberta, in order to raise awareness for his son’s debilitating disease.

Two years ago, Blaine Penny and his family were living a normal, quiet life until Blaine’s four-year-old son Evan went in for a routine surgery to have his appendix removed. His appendix was fine, but he wasn’t. Evan did not wake up from the surgery and fell into a coma.

After Evan awoke from the coma 5 days later, doctors were perplexed and could not find the root of his illness. Finally, after six months of tests, Evan was diagnosed with a probable Mitochondrial disease, which is a rare and often under-diagnosed disease that affects the cells ability to produce energy. Evan is now six-years-old and can no longer walk, talk, or [...] continue the story

Fundraising as a Survivor

By Kristen Knott

Written April 24, 2014

I am thrilled to announce that Team Wonder Women, made of friends and colleagues will be walking with me at The Shoppers Drugmart Weekend to End Women’s Cancers benefiting Princess Margaret Cancer Center that will be held in Toronto September 6-7, 2014.

In August 2013 I reached out to the women in my life, and told them all that I wanted to give back and raise needed monies for local cancer research. I then proceeded to build the Wonder Women team website and my own personal donations page. I was thrilled when I surpassed my individual fundraising goal of $2000 within a few weeks. I was thrilled and genuinely moved by the people who sponsored me for this event. THANK YOU.

Team Wonder Women now has 10 walkers all who at a minimum will raise $2000 for this event so we will collectively raise at least $20 000. There are a few more friends that may join as walkers, which in turn will increase our team donations. Another friend has worked for the event and has dropped off brochure kits at local businesses to raise awareness. She is using the monies she is paid for this work [...] continue the story

Jill Bolte Taylor’s stroke of insight

One morning, a blood vessel in Jill Bolte Taylor’s brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness …

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the “Singin’ Scientist.” “How many brain scientists have been able to study the brain from the inside out? I’ve gotten as much out of this experience of losing my left mind as I have in my entire academic career.”

Jill Bolte Taylor

Life with an Ileostomy: Celebrating 6 Years!

By Leah Sannar

Ahh, don’t you just love exploring the lighter side of life with an ostomy? Anyway – guess what? This month marks my 6th “Ostoversary.” In case you’re new to this fabulous term, which I know you are because I just made it up, it’s a combo – Ostomy/Anniversary. This is a big deal you guys! I can’t believe time goes by so quickly and that I’m already celebrating 6 years! And I do use the term “celebrating” on purpose, because that’s exactly what I’m doing. I’m celebrating. Sure, living with an Ileostomy has had its challenges. And they are definitely challenging; I don’t mean to downplay them. But when you put those trials next to the ones I faced with active Crohn’s Disease – they feel mild, even easy. Maybe not in the moment… but they are 100% more desirable to me, than going back to life without an Ostomy. (Hear more about how I ended up with an Ileostomy here.)

People are always so fascinated with me when they find out about my Ileostomy. I always get this blank stare that says, “Oh man, I have so many questions… I really want to ask, but I don’t want to offend [...] continue the story

Reconstruction: Not for the Faint of Heart

By Kristen Knott

Written April 3, 2014

It was 13 days ago that I underwent surgery again, a left prophylactic mastectomy and the beginning of bi-lateral reconstruction surgery. It has been a very long two weeks filled with pain, discomfort, and a lot of focused breathing and stillness.

The day before my surgery I felt like the old me, running around getting last minute errands done. Trying to organize the house and my work in a way that would ensure order without my involvement over the coming weeks. You know – doing those jobs you never want to do, filing the mail, cleaning out the crisper, organizing the house clutter – thankless jobs.

On top of the Cinderella chores I had an appointment at Juravinski with my oncologist. This appointment was my three-month check in on my response to Tamoxifen. When my Dad and I walked into Juravinski that morning I didn’t feel like a patient anymore. I felt different.  What I did feel though was dread deep in the pit of my belly. I knew the following day I was going back into patient mode. My strength and health that I had fought so hard to get back was well on the way, and now I was [...] continue the story

Stag Beetle

By Ptolemy Elrington

COUNTRY: United Kingdom

DISEASE: Psoriasis

FORMAT: Mixed Media Sculpture

ARTIST’S SUMMARY

This beetle is heading somewhere. It has purpose and strength and is preparing to fly. We often feel small under the eyes of others, and with a visible and constantly uncomfortable affliction this can cause us to feel reduced to the status of an insect. But everything has a place, and therefore everybody has validity which we must strive to recognize, and must strive to apply to how we view ourselves and others. This patient’s moment of meaning centers on hope, progression and potential.

PATIENT’S PERSPECTIVE

“For over 17 years Psoriasis had become the essence of me, dominating family life. I was isolated, fearful and self-loathing, overwhelmed by long periods of hospitalization and endless clinical appointments. Although my Psoriasis is not cured, since 2005 it has become manageable. Psoriasis reminds me of its presence at the least convenient times. It no longer holds me back but propels me on to make my voice heard in improving the services available to other sufferers.”

About Perspectives

‘Perspectives – Art, Inflammation and Me’ is an initiative that brings together more than 200 artists with patients in more than 40 countries. Together, they have created a series of paintings, [...] continue the story

Wild Cards

By Fong Ku

Medium used: Silkscreen print Artist Biography Fong Ku is in her second year of a Bachelor of Fine Arts degree at the Alberta College of Art and Design. With a previous degree in international development she is drawn to printmaking’s historical role in social and political movements, its emphasis on process and the inter-disciplinary combination of drawing, painting, and in the case of plate preparation, sculpture. Creating a successful print requires the artist to constantly investigate both sides and many layers of an idea, resulting in a varied and meditative practice of intentional mark making in one direction to expose the reflection of the artist’s vision. Using the artist’s words, summarize the artwork and how they feel it reflects the patient’s moment of meaning Printmaking’s capacity for producing multiples complements education and awareness initiatives. This silkscreen print, the third in an edition of three, affirms the spirit of cross-sector collaboration, and reminds us of our interconnectedness. Deb, an avid runner, introduced her health condition as the cards she was dealt. Despite severe hip joint degeneration, she insisted on being carried to her treadmill instead of the wheelchair. Card playing’s mix of fate, chance and risk has a long history. This artwork conveys [...] continue the story

Define

By Terese Mullin

Medium used: Acrylic on canvas

Artist Biography

Terese Mullin is in her second year of study at the Alberta College of Art and Design (ACAD) after having worked as an artist for ten years. She was awarded an entrance scholarship from ACAD, as well as receiving an award for earning a high GPA in her first year. Terese’s strongest artistic interest is in painting, with recent work exploring the human figure and nature, often combining and intertwining the two. She enjoys abstracting what is seen in the physical world, as well as creating non-representational work.

Using the artist’s words, summarize the artwork and how they feel it reflects the patient’s moment of meaning

In speaking with Deborah, who suffers from two immune-mediated inflammatory diseases (IMIDs), I learned that one of the worst aspects of having these diseases was loss of mobility. Deborah was a runner before the diagnosis, and could not fathom losing that integral part of her life. Adamant that she was going to “define” her diseases, instead of letting the diseases define her, she forced herself out of her wheelchair and relearned how to run, adapting her stride, speed and type of run. Deborah has a strong spirit and is [...] continue the story