Monday, September 14, 2015

University of Calgary Presentation

So, on Friday I have the opportunity to speak to the first year medical students at the University of Calgary. I have done this in the past and I must say I absolutely love it. I love talking about myself and I love talking about Hemophilia. I am also very happy that I can turn all the terrible medical experienes I have had into something useful!
The format is I speak for 15 minutes and then the students ask me questions for 45 minutes. I love the questions they ask its always interesting and fun.
Ive attached a picture of myself and Dr. Goodyear.
I've also attached the notes I used for my presentation.

Thank you so much for having me here today I really appreciate  the opportunity to talk to you.

My name is Ryanne McIsaac. I am a severe factor 5 hemophiliac with less than 1%.
I was born to a healthy family in a small town in Newfoundland. 
I was diagnosed at 7 months old after a bump on my head turned into  a large hematoma and 9 months in the hospital.
It was very difficult to diagnosed because My parents are healthy and I have two healthy older sisters. 
After being diagnosed I was often treated for ankle bleeds, nose bleeds and every time I lost a tooth.
For the first 30 years of my life I was treated with Fresh Frozen plasma. 
For small bleed I receive 4 units for larger bleeds I have received up to 50 units. 
I am currently treated with Octaplasma when it is available.  Octaplasma is a detergent treated plasma and is suppose to lessen the risk of blood born pathogens and reactions.
Throughout my life i have estimated that Ive had more than 2,000 units of blood and plasma and have spent more than 5 years in the hospital.
Small bleeds have included, wrist and elbows they are easy to treat with typically 4 units and don't require too much recovery time. 
The largest bleed I have had so far was when I was 12 years old, I developed an ovarian cyst that ruptured and bled into my abdomen, I was in extreme pain and I was air lifted to the children s hospital where I spent a whole year and received more than 150 units of blood. 

Recently my most medically interesting episode started in February I started to become very tired and short of breath. After visiting my family doctor it showed that my hemoglobin had dropped to around 100. 
I booked in with the Hemophilia clinic and we found that my hemoglobin had dropped again.
I had no signs or syptoms of a bleed. 

I received 4 units of red blood cells and follow up blood work revealed it had dropped again. 
I continued to be tired and short of breath. by the time I went into Emergency my hemoglobin was 55.
we tried to look for a bleed but after a CT scan a Colonoscopy and endoscopy and bronoscopy all we could find was that my lymph nodes were very swollen. luckily the biopsy came back negative but I was diagnosed with Sarcoidosis.
We never did find a definite cause but we suspect it was a bowel bleed.

The sarcoidosis diagnosis really bothered me because I started to feel like, well am I just gonna keep getting worse and worse. And Sarcoidosis is very vague. Right now my symptoms are sweating and fatigue, but again its a very confusing condition.
I really feel its important for me to advocate for myself as a patient and to know as much abut my illness as I can however I will say this is something that I find difficult. 

As a child you are taught that you must always treat doctors with respect and that they are always right and you learn that you are sick and they make you all better. So you grow to have this relationship with your doctor and its sometimes hard to disagree with them but I am learning each time I have an episode that there are ways to advocate for yourself the right way.
The other obstacle comes in when you factor in, pain, lack of sleep and pain meds. Its sometimes hard to not become frustrated and dismayed when a doctor says something you dont agree with.

I think the absolute best thing you can do as a physician is to have a little bit of compassion for the patient, and listen to the patient, I know you are taught that you are the expert ad most times you are, but have found that when it comes to rare conditions sometimes honestly the patient is the expert.

The hardest part about having Hemophilia in my opinion is the way it affects the people in my life. 
I had to miss my moms 65th birthday, my sisters wedding in las vegas and lots of birthday parties and events. 
I also hate the stress it puts on my husband, when I get a bleed I normal sneak out of bed and go on the couch and the look on his face when he finds me in pain breaks my heart. Overall it puts a lot of stress on my family and I just hate it, I wish I could just have hemophilia and not have to make the people around me suffer. 

Thankfully I have a wonderful support system in my life, my husband is very supportive, he has learned all about my condition over the years and is really a great advocate for me. 
I also have a large circle of family and friends that have helped me get threw the ups ad downs of hemophiliacs
Another thing I feel is important when coping with a disease is to meet other people who have been threw what you have been threw so I decided to volunteer with the Canadian Hemophilia Society, over the past 8 years I have been Co president of the national youth committee, President of the Southern Alberta Chapter of the Canadian Hemophilia Society  and a member of the patient advisory committee. I also have a blog called Hemophilia is for girls dedicated to raisin awareness for womans and bleeding disorders. 

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