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?)

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.

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.

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

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.

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."

By GEOFF BIRD

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.