Rare Disease Day: You are not alone

link on Flickr”>Watching the sunset by the water
Watching the sunset

Friday is Rare Disease Day. It is a day of awareness to remind the world that there are people living with rare or undiagnosed diseases. According to the Rare Disease Foundation:

A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. Nearly three million Canadians have a rare disease.

I have Multiple Myeloma, a blood cancer, that is a rare disease. According to the Canadian Cancer Society, it is estimated that there are 187 600 new cases of cancer diagnosed in Canada in 2013, of those 2500 are Multiple Myeloma (1400 men, 1100 women). This represents about 5 in 100 000 people.

Having Multiple Myeloma can be pretty challenging. I’ve been documenting my life with cancer on this blog and using photography for storytelling and healing. What has also helped me cope is the community I have found online, such as the health care communities on twitter (e.g. #hcsmca, #medx, #mmsm) that I engage in.

With a rare disease you can feel like you’re the only one that understands your struggles, your pain, your feelings. Reaching out to like-minded people, I have become empowered and mentally stronger through the support, advice, and education I’ve received.

To everyone dealing with a rare disease, you are not alone!

Just to give a recap, I’m living with a rare blood cancer called Multiple Myeloma. From February to November 2013, I was on my 4th chemo treatment called Velcade, where I had weekly in-hospital injections, in addition to a variety of other pills taken to supplement my chemo treatment. You can read the background on my diagnosis and previous treatments on an earlier blogpost. You can also follow me on twitter.

Photos from my most recent self-portrait project are on flickr

About tyfn

From December 2019 I've been on Darzalex (daratumumab) IV chemo with Velcade (Bortezomib) injection chemo + dexamethasone. Have Multiple Myeloma + anemia, a rare incurable cancer of the immune system. Life goal: To spread awareness about Multiple Myeloma through my self-portraits. UBC MSc Grad.
This entry was posted in Cancer and tagged . Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *