At first, the symptoms didn’t seem like anything to worry about. Rosie Sherman was leading an active life and showed no signs of sickness, but there was something strange going on. Rosie was 54 and while most of her female peers were beginning to experience the uncomfortable hot flashes that accompany menopause, Rosie was feeling quite the opposite. She was feeling cold virtually all of the time.
At her next annual checkup, Rosie’s doctor spotted something troubling—her hemoglobin levels were at 105 (the normal range is 125 to 150). Rosie was showing the telltale signs of anemia, so her GP referred her to a hematologist at Toronto’s Sunnybrook Hospital. After a series of tests, including a bone marrow test, Rosie received a diagnosis: she was suffering from a rare autoimmune condition called cold agglutinin disease (CAD).
“I was very fortunate to get such a quick diagnosis,” says Rosie, now 66 years of age. “On this journey, I’ve been lucky with so many things. CAD is very rare and a lot of people affected by the condition don’t get correctly diagnosed for years.”
Rosie’s positivity in the face of such a serious diagnosis is typical of her upbeat attitude, but CAD should not be understated. The disease, which causes the body to attack and destroy its own red blood cells, is completely life-changing. Those affected (an estimated 10,000 in North America and Europe) often suffer from chronic anemia that saps their energy and creates circulatory problems in the hands and feet that make them hyper-sensitive to cold. Other symptoms can include extreme fatigue, dizziness, headaches, pale skin, and dark urine.
Creating a new normal
When she was first diagnosed, back in 2006, Rosie was told that she needed to keep herself warm all of the time. If Rosie was to remain in Toronto for the winter, she would have to stay indoors—all day, every day. For a fun-loving, energetic mother, daughter, and wife, that was simply not an option. So, Rosie and her husband David decided to sell their downtown Toronto home and purchase a property in Boca Raton, Florida, where they now reside for the winter months.
“I was very fortunate that my son had just left for university. I don’t know what parents would do if they were diagnosed and had small children at home,” Rosie says. “However, what I didn’t realize was that air conditioning was now my enemy. Here, in Toronto, I couldn’t go outside and in Florida, I couldn’t go inside. Every single grocery store, mall, and movie theatre is too cold for me.”
Rosie has also been subjected to dismissive remarks from friends and acquaintances who are unaware of the seriousness of the disease. “CAD significantly alters the life of patients after diagnosis,” says Dr. Christine Cserti-Gazdewich, Laboratory and Clinical Hematologist at the University of Toronto and University Health Network. “An attack that begins with discomfort can quickly escalate to the point where a patient needs hospital admission and transfusion care.”
Finding her silver lining
In a short period of time, Rosie had to give up her decorating business, quit playing competitive tennis, and even ask for help with simple tasks like grocery shopping. “Yes, I can wear four layers, a hoodie, and a scarf to go to the grocery store, but even then, I often turn purple,” Rosie says. “It gets so extreme that grocery clerks have told me that I have purple paint on my face, but really I am just very cold.”
She has since replaced her love of tennis with a strong passion for painting and can often be found in her home studio creating the beautiful art that adorns the walls of her Thornhill, ON, home. “I tend to immerse myself completely in the things that I love,” she says. “And painting has allowed me to do this in an environment that works for me.” In recent years, Rosie has been represented in a number of galleries throughout Canada and the United States.
New hope for Canada’s CAD community
Rosie has also suffered numerous health scares in recent years, all related to CAD. It’s a situation that has been made all the more challenging by the fact that there are currently no approved treatments available for sufferers. Disease management generally involves frequent blood transfusions, which provide short-lived relief, or non-approved medication that is sub-optimal and not covered. She has also found it extremely difficult to find a blood testing facility that will cater to the unique needs of a patient with CAD, further underscoring how little is understood about the disease in the broader medical community.
“New trials offer hope,” says Rosie. “When I was diagnosed, I was told there was nothing I could do or take—I just had to keep myself warm.” Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD), expands on Rosie’s thoughts. “Like most rare disorders, there are no targeted effective therapies, so often physicians are doing “trial and error” symptom management with processes like plasmapheresis or drugs for similar conditions. What we are trying to do at CORD is to help foster a climate for early access to clinical trials for promising new therapies for rare conditions.”
It’s safe to say there are people in Canada currently affected by CAD who do not know they have the disease. They may dismiss their symptoms as purely ‘feeling cold,’ as Rosie did. But that dismissiveness could have serious consequences. This is why Rosie urges anyone who thinks they may be displaying symptoms of CAD to seek expert medical advice right away.
“CAD is potentially life-threatening, so if you don’t seek medical advice and treatment, it can create all kinds of complications,” she says. Rosie credits her family, friends, and CADdy Chatter, an online support group that offers empathy, guidance, and information for the CAD community, for keeping her optimistic and focused on the future.
The Canadian Organization for Rare Disorders (CORD) is dedicated to supporting the rare disease community in Canada. Please visit www.raredisorders.ca to seek additional resources on CAD.
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