Saturday, December 15, 2012

It's Christmas time in the city

So, it's almost Christmas time again. My favorite time of year. With that being said, I can't help but feel a little bit guilty every year because of all the wonderful things we have while and some people have nothing. Every day when I get home from work there is a parcel or card or gift of some sort waiting for me. It's getting to the point where you can hardly see our Christmas tree!
Not only do I think of the less fortunate but I also think of those who can't afford treatment for their Hemophilia. It breaks my heart to know that there are people out there with bleeds and have no treatment or hope in sight.
This is a great organization that is dedicated to providing Hemophilia care for people who can't afford it. Please take a minute and check out Save one life does exactly that, it saves a person from the pain and suffering of bleeding disorders. I hope everyone has a safe and happy Christmas season!

Friday, December 7, 2012

Centre for Blood Research

So, I was recently asked to write a little bit about myself for the centre for blood reasearch. Please check out their website here!

So this is what I came up with. If you have a minute please read.

My name is Ryanne Radford. I am a female sever factor 5 hemophiliac with less than 1% factor five level. I was born and raised in a small town in Newfoundland and Labrador with a population of about 10,000 people. It was there that I diagnosed with Hemophilia at seven months old. My diagnosis came about after I hit my head and developed a large hematoma on my head. It took a while for me to be diagnosed because I have no family history or Hemophilia. My mom and Dad are healthy and I have two healthy older sisters and lots of healthy cousins.

When I first started showing signs and symptoms of Hemophilia the doctors suggested that I was perhaps playing too rough. My mother says that she knew that wasn't the case and my Aunt had suggested Hemophilia but was told that that was nearly impossible. After 9 months of my parents travelling back and forth from our home town to the hospital about an hour away I was finally diagnosed with hemophilia.

In larger cities Hemophilia is not that rare but in my little home town it seemed very suspicious to have a baby covered n bruises and bleeding from the nose and mouth. I know the hospital contacted social services several times to investigate my family. When I heard about this at first it was very upsetting but I know the epople at the hospital were just doing their jobs.

My family doesn't often talk about how hard this was on them. They always act like it was no big deal but every now and then they will mention bits and pieces of what was going on in their minds and I know it was a nightmare for them. My older sister says that she always felt like a terrible big sister because there was nothing she could do to help me. My mom said she found it hard to see me hooked up to so many machines and IV poles. My father said that he was once told that I wouldn't live to be past 18 years of age. I also remember them saying it was very difficult to find a baby sitter for me because no one wanted to babysit a child who could get hurt so easily.

In the early days they didn't have the stylish helmets for Hemophiliacs like they do today so the physiotherapy department at the hospital did their best to create a protective helmet for me made out of stripes of material. I wore my helmet around the house but my mother didn't want me to be treated differently so I didn't wear it out in public very much.

When it came time to go to school I was very lucky, I was never treated any differently and my teachers seemed to be aware but never afraid. I think that was because of my parents they treated me just like any other child and everyone else seemed to follow suit.

Growing up I would be treated with four units of Fresh Frozen Plasma every time I fell off my bike, lots a tooth or twisted my ankle. The most traumatic experience I have had to date was when i was When I was twelve years old I started my period and began having lots of problems, it would not stop and I began loosing lots of blood. I began getting treated with 4 units of Fresh Frozen Plasma once a month which worked for a while until I developed ovarian cysts which ruptured and bled into my abdomen. This was a major bleed and I spent almost a whole year in the Janeway Children’s Hospital in St. John’s, NL. I was treated with more than 100 units of fresh frozen plasma. The doctors contemplated a hysterectomy but felt it was too aggressive. They tried several which imitated menopause and caused me to have some very interesting symptoms but I was still having some bleeding so I eventually tried the birth control pill which seem to work perfectly. My other major bleeds have been into my iliosopas muscle. I have bled into this muscle several times and each time it seems to quite a large bleed. My most recent ordeal was in December of 2009 I was admitted into the Foothills Hospital in Calgary for an iliosopsas bleed. I was told that the bleed was quite large and was on bed rest for an entire month. Needless to say it was the worst Christmas ever! But I did get lots of presents whether or not that was because I was in the hospital we will never know!

As I get older I really worry about employment. No one wants an employee who is out sick all the time and with no warning. This has been a source of pain for me for sure as I have been fired, laid off and threatened in the work place because of my Hemophilia and the frequent sick days that I sometimes have to take. Right now I am working full time and I have hope that this will be a good experience for me.

My Hemophilia has affected every aspect of my life including, what I studied in school, where I live and my hobbies and interests. Right now I am completely wrapped up in wedding planning. Our wedding will take place on July 20, 2013 i our home town of Stephenville, Newfoundland. We are having a big church wedding with about 200 guests so you can see why I've been taking so much time in planning.

Hemophilia has been a big concern of mine when it comes to wedding planning because I worry I might get a bleed and not be able to fly to Newfoundland or I will get a bleed before the wedding and be in pain on my special day. In this case I just have to pray for the best and try not to worry about it too much and jut take each day as it comes.

The best treatment for the last 28 years has been Fresh Frozen Plasma. I will be treated with varrying amounts depending on the location and severity of the bleed. For example a simple elbow bleed might need only 4 units whereas the larger bleeds I've had required nearly 100 units. My doctor and I have recently discussed the use of Octaplas a product produced my octapharma. We have decided to go with this product as it is detergent treated and has less risk of blood borne pathogens. I have not tried this product yet and am nervous to try it.

Living with a chronic illness isn't easy. I find support in a lot of ways. I am blessed with a wonderful fiance and a large circle of friends and family. I also attend church and do a lot of volunteer work. Currently I am the Co President of the National Youth Committee of the Canadian Hemophilia Society. In am also the past president of the Calgary chapter of the canadian Hemophilia Society. I find it helpful to tell my story. I started a blog about 3 years ago dedicated to raising awareness for women with bleeding disorders called Hemophilia is for girls. I have about 105 followers and have been featured in three American publications. My blog is most popular in Canada, USA and India. Social media is a great tool and I use it on a daily basis to connect with other hemophiliacs from around the world.

I feel that it is so important to have students educated in the field of Hemophilia and bleeding disorders. Patients with this condition often need prompt care and very much need a doctor who will listen to them.

I speak every year to the first year medical students at the University of Calgary and I am always happy to do it as simply being educated can make such a huge difference in the way people with bleeding disorders are treated.

Although there is no cure for Hemophilia at the moment I feel that having resources, support and education can certainly lessen the negative effects a bleeding disorder has on someone. As for me, I feel I am doing my part by documenting my life, the good the bad and the ugly, that way maybe some other person down the road might be able to read it and get some help from it or at least it will put a smile on their face.