Thursday, September 1, 2011

University of Calgary Talk

So, yesterday I spoke at the University of Calgary to about 150 first year Medical Students. I talked for about ten minutes about my health and personal experiences and then they asked questions for about 40 minutes or so. In my opinion it went really well. The students seemed genuinely interested in learning more about Hemophilia and they asked some very intelligent questions. After class ended a few students stayed behind to say thank you. One of them even asked to Volunteer with the Hemophilia Society. It was so nice to get the positive feedback from them because I am in no way a professional speaker and I still find myself getting very nervous no matter now many times I have a public speaking engagement.
I have to admit I wish I was there speaking about something else besides how sick I am an how crazy my medical history has been but I guess you have to play the cards your dealt!

Here is a rough draft of what I spoke about and if any of the students are reading Thank you so much for your time and attention I really appreciate and I think you guys will make great doctors!

My name is Ryanne Radford and I am a severe factor 5 hemophiliac. I grew up in a small town in Newfoundland to a family with two older healthy sisters and a health mom and dad so it came as quite a shock to them when I began having huge unexplained bruises and bleeding from my ears. I was eventually diagnosed with Hemophilia at the age of 7 months old after a fall off the couch resulted in a large hemotoma.


In the beginning it was hard for the doctors to diagnose me because I have no family history of hemophilia and I am female. At one point my doctors had questioned my parents about possible physical abuse?

After receiving my diagnosis my parents were told this is a very rare condition, according to the Canadian Hemophilia Society there are only 150 cases of Factor 5 defiencey reported world wide.

The treatment I receive for bleeds are typically 4 units of fresh frozen plasma. I have had bleeds into, my head, chest, ears, nose, gums, shoulders, elbows, wrist, abdomen, hip, knee and ankles.

One of my worst bleeds was into my illiopsas muscle. I was treated at the foothills hospital almost three years ago now with 50 units of FFP and three months of bed rest.

Although the joint bleeds can be debilitating and frustrating at times by far my biggest problems have been with my ovaries.

I started my menstrual cycle when I was about 11 years old. Each month it would get heavier and heavier and I eventually had an ovarian cyst that ruptured and bled out into my abdomen. I was flown air ambulance to the hospital, my family was called in to say good bye to, it was a very traumatic experience. I was in the hospital that year for almost on entire year, during that time I completed grade 7 and received 150 units of FFP.
The doctor contemplated doing a hysterectomy but felt it would be too aggressive so I began taking a medication called synerl which imitated menopause. So at 12 years old I was having hot flashes and mood swings.
Over the years I’ve used various different types of Birth control pills to manage my cycle and they have worked for the most part however, I’ve continued to have ovarian cysts rupture and bleed out into my abdomen that seems to be the biggest problem for me.

Wednesday August 17th, I came to the emergency room with severe abdomen pain. A CT Scan revealed a mass in my abdomen which came about from an ovarian cyst that ruptured and bled. I was admitted for 5 days and treated with 25 units of fresh frozen plasma. An ultrasound showed that the mass was getting smaller. I was discharged from the hospital on Monday august 22nd and returned to normal activity on Thursday August 25th.

I am meeting with my Gynecologist next month to discuss the possible use of Lurpon to prevent ovarian cyst. So we will see how this goes.

As you can hear from my story it takes several doctors working together to treat me at times and it’s really nice when doctors take the time to build working relationships with other doctors in other specialties so things can run smoothly for me.

Hemophilia has been challenging for me Over the course of my life I estimate that I have received more than 2,000 units of fresh frozen plasma and have spent more than 5 years in the hospital.

When I am thinking of all the doctors I have had in my life the ones that stand out in my mind are ones that listen to me are kind to me.

I know that at the end of the day doctors are just regular people and it’s impossible for them to know everything but by simply listening the patient and having respect for them certainly goes along way.
I’m not sure if anyone in this room has ever been a patient but in my experience doctors were always super human to me, they would come in and help me at a time when I was in so much pain, frustrated and confused. I have the up most respect and admiration for my hematologist.
Another great thing to do for your patents its to explain to them what is going on. Theres nothing worse then when a nurse comes over and starts hooking you up and you have no idea why she is hooking you up and for what.
I have tried to overcome the obstacles in my life, I have a communications degree and a journalism diploma, I currently work full time here in Calgary. I also have become very involved in the Canadian Hemophilia Society. I am currently the co president of the National Youth Committee and co President of the Calgary Chapter of the Canadian Hemophilia Society. I also write a blog called Hemophilia is for girls. The blog is dedicated to raising awareness for women with bleeding disorders.

You can learn more about the University of Calgary at http://www.ucalgary.ca/.

4 comments:

  1. You did more for those medical students than hours in the classroom, reading medical books, or even internships and rotations could ever do. You put a human face on Hemophilia, something unfortunately that isn't done all that often. I've always enjoyed talking to the students, and giving them pieces of knowledge they may not have encountered before, as unnerving as it can be at times. If you got one of them to consider Hematology as a specialty, you did a great service.

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  2. Hi Ryanne! I'm one of the students you spoke to the other day. Thank you so much for coming in to speak to us! We really appreciated your willingness to share your experiences with us, and I know we all took a lot away from the session. Your candour was really amazing - you are a really great advocate for others with hemophilia, and I think your work with young people is so important. Like Jonathan said, putting a human face to various conditions is so valuable for us as future doctors.

    You are a fantastic speaker, by the way!

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  3. This made me cry, I miss you and love you so much Ryanne. Keep up your positive momentum!

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  4. Hello,

    I really admire how brave and knowledgeable you are, I was never born with Hemophilia have no family history but I acquired Hemophilia A( very low FViii ) after I gave a birth to my 2nd child in 2013, it is an autoimmune disease, I received treatment but my Fviii is still low and I am considered Hemophiliac...Tough disease but we have to be courage to face the challenges and lead a normal life....I live in Calgary too.

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