I don't think Toronto is the way to go long term Cal. I lived in Rochester/buffalo area for 6 years. Winters are longer and colder and with your blue smurf condition you'll spend more time indoors than in NYC. I also hated the fact that in the winter months it's so gloomy (that might be just Rochester though)
Pro-Mone,
Thanks for the brotherly love and concerns.
Lake Ontario has a moderating effect on Toronto. Granted the weather stays cooler longer, but my health condition is really only effected by rather bitter cold and especially wind chill. Out on the eastern end of Long Island in the Hamptons and North Fork the Atlantic Ocean kinda creates a very different climate that really is only two seasons: winter and summer with very brief spring and fall. Realize that this is only about 100 miles from Madhattan. I assume Toronto has a similar two seasons.
I was first diagnosed with this rare disease (one in a hundred thousand) about a decade ago, and although it could be considered a slow growing form of Cancer, I am deemed stable in a watch and wait mode. Throughout my life I have always had borderline low RBC counts, but I thought that was due bad diet and the poverty I grew up with. Now it seems evident that I likely have had this blood abnormality all my life. Perhaps only about 100 people out of NYC's 8.5 million have this rare disease, and because it is so rare it went undiagnosed all these decades.
It seems exercise is key to keeping my red blood cell count up, because the antibody that is too abundant that causes my red blood cells to stick together and get damaged causes premature red blood cell death (Hemolizing). My bloodwork indicates RBC counts that are just under the normal range meaning I am slightly anemic, and the size of my red blood cells are all large, meaning they are new cells and young.
Understand that RBC's diminish in size as they age and their normal life span is about 90 days. It seems that I can sustain a viable level, and that physical exercise has proven to be key as well as diet as I age.
There is a very remote chance of my disease making the jump into a full blown Lymphoma, but that is likely less than a 5% chance, meaning there is a very high likelyhood I can continue in watch and wait mode for the rest of my life without any treatment.
The treatment is with Monoclonal Antibodies which is not a cure but a program to manage. There is no cure for Cold Agluttinin Disease. Treatments do seem to correlate with an increased likelyhood of jump to Lymphoma though and I am happy no treatment seems to be needed. Once that happens the odds change.
The blue attacks you have witnessed are actually an indication of blood restriction that is due to a change in viscosicity of my blood due to an elevated level of IgM anitibodies that is cause by an abnormality in my bone marrow.
Cal
