Tuesday, April 26, 2011

Just when you thought this test couldn't get any worse!

So, the only thing I hate more than getting a pap test is writing a blog post about it but I think it's important to talk about because Hemophiliacs need to take special precautions when it comes to this particular test. I have about a dozen of these tests in the past and have never had any problems until yesterday. I returned home from the doctor only to find the test caused me to have a lot of bleeding. Apparently this is not a regular occurrence and at the moment I am quite concerned. I am trying to get in to see my gynecologist and have contacted my hemophilia treatment center. I have spoke with other hemophiliacs and here is my best advice. Take cyclokapron (tranexamic acid) prior to the exam also, make sure you see a gynecologist who knows about your bleeding disorder and not a general practitioner. This is never a fun topic but ever since this happened to me I've been searching the Internet for answers and I can't find any so if you are a female Hemophiliac and you do not have a concentrate or recombinant factor then this post is for you! (That's like what 5 maybe 6 people in the world?)

Sunday, April 24, 2011

Happy Anniversary!

So today is my one year anniversary since Ive been a Catholic!
This time last year I completed a year course the become officially catholic. It was such a beautiful experience I must say. It was also nice to have my mother in law and brother in law and Zane with me in Church today. It took me a long time to become a catholic. I taught Sunday school, confirmation class and was in the choir. I also went to catholic school all growing up but I was baptized Anglican so while all the other students were doing their first confession and first communion I sat at the back of the church chatting with two other girls wondering what was going on. I always felt left out so I much say its nice to be a part of it all now.
I feel very blessed this Easter weekend because Zane's family has been around and we've been shopping, visiting and having delicious meals together. I hope everyone else is having a great Easter weekend.

Sunday, April 17, 2011

Happy World Hemophilia Day!

So, today is World Hemophilia Day! I am celebrating by going out out for supper with my wonderful friends. I've also been eating lots of red velvet cupcakes-I can't think of a better way to celebrate. In honour of Hemophilia day I recommend that you take a minute to check out the following links.

http://hemohijinks.com/2011/04/17/the-faces-of-hemophilia-world-hemophilia-day-2011/ This is an awesome blog.

Also, check out this video, great music, beautiful pictures and it only made me cry twice! https://www.facebook.com/?ref=logo#!/video/video.php?v=10150222455936140&comments

Another way you can make World Hemophilia Special is my clicking the donate button and helping someone in India who cannot afford treatment!

I pray all Hemophiliacs have a happy and healthy day and I pray that soon we will all have access to care.

Saturday, April 16, 2011

World Hemophilia Day is getting close

So, I found this awesome teaching lesson for those interested in learning about World Hemophilia Day! I think it's crucial that we raise awareness about Hemophilia and bleeding disorders in general. This lesson shows how to do so in an easy to understand manner!

Don't forget World Hemophilia Day is tomorrow Sunday April 17th! Wear red to show your support or feel free to click the donate button on my blog. All the money raised will go to helping Hemophiliacs in India who cannot afford treatment!

World Hemophilia Day (WHD) started in 1989 as a way to raise awareness of the disorder and to bring attention to the needs of those who suffer from it. The reason it’s on April 17 is because that’s the birthday of the World Foundation for Hemophilia (WFH) founder Frank Schnabel. On WHD, organizations around the world organise a wide range of activities, events, and campaigns to help hemophiliacs. There is a different theme every year. Previous campaigns have included “Get vaccinated! Prevent hepatitis A and B” and treating people with all bleeding disorders. The WHF says treatment includes areas such as physiotherapy, information, training, diagnosis, and research for a cure.

Hemophilia comes from the Greek haima "blood" and philia "to love". It is a group of genetic disorders that makes it difficult for the body to stop cuts bleeding. The cells that the body needs to clot blood are missing. Hemophilia is a hereditary disease and so it is passed down through generations. The gene that creates the disorder comes from the mother and is passed almost entirely to male babies. When hemophiliacs get a cut, the bleeding lasts much longer than in normal people. Even a small cut can bleed for weeks, and in some cases cuts may never heal. If cuts occur in the brain, they can be fatal. Hemophiliacs live a stressful life because they always have to be careful not to get even the smallest cut.

Read the entire lesson at http://www.eslholidaylessons.com/04/world_hemophilia_day.html

Friday, April 15, 2011

Hemophilia around the world

For Many Hemophiliacs, Cost of Treatment Beyond Reach Nurfika Osman April 14, 2011

Article from the Jakarta Globe:

Three-quarters of Indonesian children who are known to suffer from hemophilia don’t receive the proper medication that allows them to lead normal lives, an activist says.

Moeslichan, chairman of the Indonesian Hemophilia Community Association (HMHI), said on Wednesday that the main obstacle was the prohibitively high cost of the deficient clotting factor, which sufferers must inject on a regular basis.

“The injections for hemophilia are very expensive: each unit of the [deficient clotting] factor costs 50 cents, and a person needs five hundred to a thousand units per shot,” he said, adding each shot could cost Rp 3 million ($350). “And a person with hemophilia may need three shots per week.”

Hemophilia is a genetic disorder that impairs the body’s ability to control blood clotting, thus rendering its sufferers prone to hemorrhaging from even minor wounds. The disorder is divided into two groups: hemophilia A sufferers have a deficiency in the clotting factor VIII, while those with hemophilia B have a deficiency in the clotting factor IX.

“If hemophilia isn’t managed properly, the patient will be unable to walk or move properly because of swelling in the legs and will die at a very young age,” Moeslichan said.

The disorder occurs in one in 10,000 people, meaning Indonesia could have up to 23,000 hemophiliacs. However, the HMHI says its data shows only around 1,200 patients in the country.

The group says there are five times as many Indonesians suffering from hemophilia A as there are those with hemophilia B. Hemophilia A is considered far more deadly than hemophilia B.

“Most of them aren’t screened, and this is very dangerous because they need a lifetime of medication,” Moeslichan said, adding that the disorder was rare in females.

Tunggul Situmorang, director of MRCCC Siloam Hospital in Semanggi, South Jakarta, said the challenge was to provide affordable treatment to patients without access to the much-needed medication.

“Affordable and good-quality medication is what they need,” he said. “If we can screen them, we can help hemophilia patients.”

To commemorate World Hemophilia Day, which falls on Sunday, MRCCC Siloam Hospital is planning a free seminar on Saturday for members of the public interested in learning more about the disorder. The hospital is also offering a 50 percent discount on blood screening tests for hemophilia starting on Saturday and running until the end of May. The tests usually cost Rp 310,000.

“Hemophilia isn’t just suffered by babies,” said Eka Tjokrosetio, coordinator of the hospital’s clinical pathology division. “Sometimes those in their 20s can also suffer the disorder, but with much less severe conditions.”

Eka added that MRCCC Siloam Hospital planned to set up a foundation for people who could not afford expensive medications.

Tuesday, April 12, 2011

Surfers pitch in for young hemophiliac

So, a friend showed me this article and I think it is just awesome! I've attached a photo so you can see the ridiculous helmet I had to wear when I was a baby. But when it comes to safety your parents don't care what you look like.  I guess I really did have a face only a mother could love. I hope you enjoy this article as much as I did.

Looking out over the water from the backyard of her Ketch Harbour home, Michelle Howell pointed across the bay to the tip of a headland while keeping an eye on Callum, her two-year-old son.

"Sometimes, we get surfers out past the point," she said Thursday. "It’s neat; they’ll walk all the way out along the shore to get out there."

A split second later, she darted off, chasing after Callum while her four-year-old daughter, Freya, played quietly nearby.

Callum has hemophilia A, a rare, genetic bleeding disorder that affects about one in 10,000 people in Canada.

Like other hemophiliacs, Callum’s blood doesn’t clot normally, meaning an innocuous tumble in the backyard could have very serious consequences. A fall on his knees or a tough spill onto the bum could cause lasting damage to his joints. A hard knock on the head could easily cause a life-threatening bleed.

It means Howell is constantly on her son’s trail, literally shadowing his every move and watching him like a hawk to make sure she’s there to catch him when he falls.

During the past nine months, Callum has been hospitalized eight times and Howell said they’ve visited the IWK Health Centre more than 100 times for blood infusions, a treatment that helps mitigate bleeds.

To help reduce their trips to the hospital, Howell tried to find something that would help cushion Callum when he fell.

"We tried a few things," Howell said. "We tried to cut up yoga mats. I even used lining for cupboards, but none of it held up really well."

Howell and her husband, Colin Guthrie, both avid sailors, then decided to cut up an old neoprene wetsuit to see if it would work.

The thick, rubber-like material turned out to be perfect for the job.

But the young boy quickly outgrew his first wardrobe, and his parents were out of wetsuits, which can cost upwards of $400 brand new.

With nothing suitable commercially available, a volunteer at the IWK suggested Howell contact the webmaster of ScotiaSurfer.com. They did and a short article was posted on the website outlining Callum’s condition and the family’s need for more wetsuits.

"The response from the surfing community has been great," Howell said.

In the month since the post went up, she has received eight wetsuits from surfers. Some of them told her they were more than happy to donate their wetsuits because it was a way to reuse a petroleum-based material that would otherwise be bound for a landfill.

Now she’s giving new life to old neoprene wetsuits used to protect surfers from the cold North Atlantic waves by transforming them into protective clothing for her son.

With the help of her mother-in-law, Vivian Hall, she’s sewn thick strips of neoprene on the elbows and knees of Callum’s shirts and pants to provide extra cushioning to the areas most susceptible to damaging internal bleeds. Anne Vaughan, a social worker at the IWK who works with Callum and other hemophiliacs, said it is the first time she’s heard of wetsuits being used as a cushion for hemophiliacs.

She said it seemed to be working and that was important because hemophiliac toddlers need to be able to roam and explore in order for proper and physical development to occur.

"It’s just in those early years where they need . . . a little bit of extra protection because they don’t know how to protect themselves," she said.

Vaughan said Callum is one of the country’s most challenging cases because "this little guy has an exceptional propensity for bleeding."

Howell hopes to convince local surf shops to accept donated wetsuits. Currently she’s meeting with people in random parking lots around Halifax.

And once her son’s situation stabilizes, Howell hopes to continue to create protective clothing, which she plans on donating to hemophilia treatment centres across the country.

"I feel like we’ve had really good support and I’d like to continue that, to reciprocate."


Monday, April 11, 2011

Carter's Quest For A Cure A Success!

So, this weekend was my Dad's 60th birthday celebrations. It was so nice to have my family around for the weekend. I wish they could be here all year round. I think my Dad had a really great birthday and I could tell my dad had a great time too.
This weekend was also, Mall at the Hall. We raised over 5,000$ for Hemophilia. It was amazing to see all the support and all the people that came out for this event. I spoke with Jenny, the organizer today and she said she is thinking of giving all the money to the Canadian Hemophilia Society's Million Dollar Club. http://www.hemophilia.ca/en/about-the-chs/to-support-us/hemophilia-research-million-dollar-club/.
This club is all about raising money for research for Hemophilia. I think this is a great idea and I am so proud of Jenny but it wasn't still she said, "We will donate the money to the Million Dollar Club so they can find a cure," that I realized I have never had any hope that they would find a cure for Hemophilia in my lifetime.
I consider myself a positive upbeat person but I have never dreamed of a cure this whole time I have been hoping and praying for a recombinant factor 5.
I also realized that my reasoning for joining the Hemophilia society was to raise awareness more so than to raise money for a cure.
Either way, we are all in it to improve the lives of lives for Hemophiliacs one way or another.
Another thought that occurred to me this weekend was that it would be so nice to have a family member with Hemophilia.
Of course, I would never wish this disease on anyone but it would be great to have a someone in my family who knew what I was going through.

Friday, April 8, 2011

Happy 60th Birthday Dad

So, today is my Dad’s 60th birthday! My Dad and I have always had a close relationship even if we weren’t always close in proximity to each other.

We also look a lot a like! My mom always tells me the story about how she and I were in West Edmonton mall together when I was only a few years old and someone said to her, that must be Howie Radford’s daughter.

One of the best times dad and I had together was when I was about 12 years old. I was really sick and had to spend a year in the Janeway Children’s Hospital. My Dad flew down from Alberta and spent a few months with me in the hospital while I recovered. Even though I was in the hospital we had an awesome time together. We coloured and made arts and crafts watched tv and movies. We also spent many hours starting at Where’s Waldo books to see who could find him first. That visit really helped lift my spirits and my Dad really encouraged me to stay strong and get better. Eventually I was released from the hospital and my dad went back to Alberta. I was happy to get out of the hospital but I was also very heart broken to not have my Dad around anymore.

My Dad also makes me laugh more than any other person I have ever met in my life. Zane always says that he never hears me laugh as much as when I am around my Dad.

Since we now live in Calgary I get to see my Dad all the time. I call him every night and I get down for visits whenever I can. He is always there to support me when I am sick and helps me with life decisions. I can’t remember the last birthday I got to spend with my dad and I feel very blessed to be with him today!

Wednesday, April 6, 2011

Carter's Quest for a Cure

So, as you know I am helping my friend, Jenny with her fundraiser called Carter's Quest for a Cure. It's been a lot of fun organizing it and it has been amazing to watch this grow from an idea in Jenny's head to a huge fundraiser that's taking place this saturday! It's amazing what can happen when people get together for a cause.
Calgary hemophilia group holds fundraiser

Carter’s Quest for a Cure takes place Saturday

By Lea Storry, Calgary Herald April 6, 2011 4:20 PM CALGARY -- A city mother just wants to take care of her son and is hoping others will help her in the fight against hemophilia.

World Hemophilia Day is coming up and Jennifer Ruklic and a small group are marking the occasion with Carter’s Quest for a Cure, a fundraiser on Saturday. Ruklic is Carter’s mom, and her two-year-old son suffers from severe type A hemophilia.

“Carter can’t clot his own blood,” Ruklic explained. “He needs a synthetic factor, and he gets IV infusions once a week. I do this at home, and from start to finish it takes about 20 minutes from getting his hands cleaned to the end of the treatment.”

Ruklic said she is amazed the youngest of her two kids can sit still for that long. He does wiggle a little bit, admitted the mom, but otherwise he’s a regular boy who loves to swim and play with his seven-year-old sister, Cassie.

Carter’s Quest for a Cure is taking place at the Glenbrook Community Hall at 3524-45th Street S.W. on Saturday from 10 a.m. to 4 p.m. There’ll be home-based businesses such as Epicure and Stella & Dot as well as a bake sale and raffle.

“It’s a worthwhile cause,” said Ruklic. “My son is only two years old and he can’t be his own advocate. He relies on the love and caring of the people around him.”

All proceeds will go to the Canadian Hemophilia Society, Southern Alberta Region. World Hemophilia Day is April 17.

© Copyright (c) The Calgary Herald

Monday, April 4, 2011

From a different point of view

So, today I had an interview for a magazine in the states. They are writing an article about how social media is connecting people in the Hemophilia community and decided to write and article about me. I am really looking forward to reading it and I really enjoyed doing the interview today. I will post it as soon as it comes out. In other news I have been told that I use too many exclamation points so I am putting a stop to that!
This post is from a friend I work with on the National Youth Committee of the Canadian Hemophilia Society. His writing shows how Hemophilia affects not only the person living with Hemophilia, but also, the family. I hope you like his writing as much as I did! Also for the french translation visit http://generation-clot.blogspot.com/.

How Hemophilia has affected my life: from a different point of view.

I would like to start off by saying, unlike most writers on this blog. I do not have hemophilia, or von willebrand or any bleeding disorder of any sort; in fact you could say I am the exact opposite. My wounds heal extremely (and I do not use that term lightly) fast. Recently I have suffered a VERY bad wound while working which involved me slicing my arm open near my wrist and cutting some serious veins opened, so we rushed to emergency. When we arrived I took the towel off my arm, which was soaked in blood off to the surprise of my wound not bleeding what so ever. The doctor was astonished that it was not bleeding. He proceeded to tell me that it should have been a life threading injury and was puzzled how it healed so fast. Well that all about me, now for the good stuff

So you are probably now wondering how I am even connected to hemophilia after hearing that little blurb. Well ill start off at the beginning of this. My younger brother was born 3 years after me. About the time he was 1-2 years old he kept getting swollen arms and knees, we would keep taking him to the doctor he when through lots of x-rays and they could never figure anything was wrong, so he would end up getting casts because they thought he had broken something. Now for whatever reason when he was about 3 years old they decided to do some blood work on him, and they came back with some strange results, he was a severe hemophilia A. at first my parents had no idea what this was nor did any of my family. That is right none of my family back further then 120 years had and bleeding disorder that we knew of. My entire family and I (from my generation to my great grandparents) went through numerous blood tests (which I did not enjoy one bit being 6 years old) and came up with nothing after 3 tries for all of us! So they finally labeled it as a genetic mutation. We first went to a Nova Scotia hemophilia family weekend and meet a load of new people that had the same problems and they were all very nice and we had a great time. They had made it easier for my parents and my brother in many ways, including stress relief. My Father went on to become the president of the NS chapter for numerous years.

Now I am getting older and I would love to help give back to the Hemophilia society. I have been volunteering with our provincial summer camp for 4 years, which is a blast every year, for young and old! And now I am part of the national Youth committee. Everyone I have ever met from the effect of hemophilia is amazing, and I believe that hemophilia has changed my life for the better! I hope to someday be a “big wig” somewhere, anywhere! I could help out in this massive loving society. And to give back what was given to my family while struggling with my brother diagnosis of hemophilia. In this community you don’t have to have a bleeding disorder to fit in, you just need a passion. Anyone can help out here, bleeding disorder or not!