Thursday, June 30, 2011

O Canada!

So, tomorrow is Canada Day. I think as Canadians we appreciate our country. I have never really thought about it very much to be honest. As a child I loved Canada day because we would get a day off and get to watch fireworks. But as an adult I realize that being Canadian means much more to me than just a holiday. Being an Hemophiliac, being a Canadian means that I have FREE access to some of the best treatment in the world. I truly believe that if I were born in any other country I would not have the quality of life I have today. At the moment I can go to the hospital anytime night or day and not have to think about how much it will cost. I can’t imagine having to pick between health care or a mortgage payment, or worse yet, not even having access to treatment in the first place. In some countries Hemophiliacs do not have enough money to pay for their treatment and thus have to continue bleeding until it eventually stops on its own. This practice is very painful and can cause long term muscle, nerve and joint damage. In some countries patients can’t even afford the cost of transportation to a Hemophilia Treatment Centre and when they get there the centre may not even have product available for them an if they do the patients often can’t afford it. The fact that this is going on in the world breaks my heart. It truly bothers me that I while other Hemophiliacs are sitting in their homes slowly bleeding internally praying for it stop. In my mind this just shouldn’t be. I’ve mentioned this program before and I can’t stress enough how important it is for us to donate to things like this. Check out Save One Life a program dedicated to helping people with Hemophilia. Wherever you are from there is always someone else in the world who could use a helping hand so while your celebrating Canada Day on July 1st or the 4th of July in the US take a minute to click on Save One Life and help someone with Hemophilia today!

Wednesday, June 29, 2011

Hope for Hemophilia

So, the following article is all about how gene therapy has the potential to cure Hemophilia. When I read things like this my first reaction is to get excited. I can't imagine how wonderful my life would be without Hemophilia the prospect is just so exciting to me that I don't even let myself believe that a cure is possible. Then the critical side of me kicks in and I think that something like this is too good to be true.  Read for yourself and make your own opinion but I am going to allow myself a few minutes to imagine a world without Hemophilia.

What’s the News: Hemophilia is perhaps best known as a disease of nineteenth-century royalty (specifically, of the oft-intermarried Hapsburgs), but it has evaded our efforts at a cure for thousands of years. And its effects are gruesome: mutations in the gene for a crucial clotting factor mean that victims can rapidly bleed to death from even small cuts.

Now, researchers working with hemophiliac mice have demonstrated a simple and apparently safe technique to swap in a functioning gene, giving hope for a future respite for sufferers of the disease.

How the Heck:

Gene therapy usually involves removing cells from a patient, repairing their damaged genes in a Petri dish, reinserting them, and hoping that they’ll take, a fraught, expensive process. These researchers performed the whole procedure within their mouse subjects, sending in enzymes to snip out the defective gene and a virus carrying a normal gene to replace it.

The mice had been engineered to carry a human gene for hemophilia, and the enzymes and virus had been specifically engineered as well: the enzymes would cut only certain sequences of DNA, patterns that were known to appear on either side of the defective gene, and the virus, which naturally infects the liver cells where the clotting factor is made, would swap in an unmutated gene, instead of the viral genes it would carry in nature.

The treated mice bled for a significantly shorter time than untreated mice and made 3-7% of the normal level of the clotting factor, a level that would result in only mild bleeding in humans. What’s more, even after part of the liver had been removed and allowed to regenerate, the mice continued to produce clotting factor, a sign that the modified cells were passing the normal gene down to their daughter cells.

What’s the Context:
Because the genetic cause of hemophilia is clear, it’s a prime candidate for gene therapy, the process of altering damaged or abnormal DNA to restore normal function.

Gene therapy has shown promise in the lab for treating HIV, Parkinson’s, and even color blindness. Despite early, serious setbacks for gene therapy, clinical trials are now under way for treating a wide variety of genetic diseases.

The type of hemophilia treated here happens to be hemophilia B, which accounts for about 20% cases. But because the therapy replaces the entire gene, it seems likely it would work for the more common hemophilia A as well, which is a mutation in another clotting factor.

Not So Fast:
A serious concern about gene therapy is that enzymes could clip healthy parts of the genome, leading to cancer and other diseases or reactions—researchers have proceeded with utmost caution since children receiving gene therapy for X-linked severe combined immunodeficiency (also known as bubble boy syndrome) developed leukemia as a result of their treatment. One of the reasons scientists perform gene therapy in a Petri dish is so they can check for this by sequencing the genomes of the cells they plan to reinject, as well as watch them for signs of abnormality before putting them back in their patients.

Obviously, it would be much easier if therapy that bypassed this process could be relied upon to not harm the patient, and the fact that the mice have experienced no ill effects over the eight-month period since the treatment is a good sign, as is the fact that the enzymes seem to have snipped only one site beyond than their intended target. But this is a known danger with gene therapy, and researchers will have to show that they can prove the treatment doesn’t cause damage to the rest of the genome.

The Future Holds: This finding is just the first step on a long road to developing a genetic treatment for hemophilia. But it’s a very tidy study, and should prompt much future research into gene therapy.

Reference: Hojun Li, Virginia Haurigot, Yannick Doyon, Tianjian Li, Sunnie Y. Wong, Anand S. Bhagwat, Nirav Malani, Xavier M. Anguela, Rajiv Sharma, Lacramiora Ivanciu, Samuel L. Murphy, Jonathan D. Finn, Fayaz R. Khazi, Shangzhen Zhou, David E. Paschon, Edward J. Rebar, Frederic D. Bushman, Philip D. Gregory, Michael C. Holmes, Katherine A. High. In vivo genome editing restores haemostasis in a mouse model of haemophilia. Nature, 2011; DOI: 10.1038/nature10177.

June 27th, 2011 2:44 PM Tags: gene therapy, Genetic Engineering, hemophilia, Nature (journal)

Monday, June 27, 2011

Travel and Hemophilia

So, November 4th my sister is getting married in Las Vegas! Zane and I are planning to make the trip down for the wedding and we are really looking forward to it. The only problem for me is I feel like Hemophilia and Travel are just two things that don't go together. There is some debate however as to whether or not I am just letting my Hemophilia "control" me and letting it ruin my travelling ambitions or if i am just being responsible. I have heard great stories about Hemophiliacs trekking across the globe and I have also heard many horror stories of Hemophiliacs who ended up in life threatening situations because they were away from home and without proper treatment. For my trip in November I plan on having a letter from my doctor explaining my situation, I will be phoning the hospital in Las Vegas a head of time and telling them about myself. I will also be bringing my factor first card with me, my medic alert bracelet and I will be getting travellers insurance. I must admit I am nervous about it since it is my first time leaving the country but I think it will be a lot of fun. I am so excited to watch my sister get married and I am very glad I will get to be there! Hemophilia or no Hemophilia. 

Monday, June 20, 2011

Father's Day

So, this time last year I was in the hospital with my darling Charlie. It was father's day so I bought him a cook book and a baseball cap only to turn around and have to pack it up into a suitcase and bring it back to Stephenville, without Charlie. It took moms weeks before she could unpack his suitcase from the hospital. It stayed at the bottom of the stairs and I would cry every time I would walk over it to do the laundry. I came back to Calgary hoping to get away from all the reminders of Charlie but being away from most of my family just seemed to make it worse. I had a really hard time unpacking every time I would take an item out of my suitcase it would remind me of the six weeks mom and I spent in St. John's running back and forth from the mall to the hospital trying to distract ourselves from the fact that one of the people we loved most in the whole world was seriously ill. I spent most of the day in bed yesterday hoping it would pass by while I was sleeping. I've always hated father's day in a lot of ways. My parents divorced when I was 5 so I spend most Father's Days with my momma. Now I live in Calgary and I am finally a lot closer to my Dad. Part of me is sad without Charlie and part of me is glad a I get to spend it with my Dad.

Saturday, June 18, 2011

If you don't have something intelligent or nice to say why say anything at all?

So, as you know I get blood transfusions on a regular basis and thus I have a huge interest in Canadian Blood Services and it's policies and procedures.
The following article is discussing the various things Canadian Blood Services is exploring to accommodate donors who do not speak English. I find this article to be very interesting but what is even more interesting is the comments from readers that follow this article stating that CBS is racist. I think if you aren't receiving blood or you don't understand the reasoning behind certain rules and regulations you can't just call is racist and move on.
Sometimes people just don't know enough about the subject and shouldn't be commenting on it. I'll all for freedom of speech but if you don't have something intelligent or nice to say, why say anything at all?

Blood agency faces barriers in ethnic donor search

CBC News Posted: Jun 17, 2011 9:37 AM ET Last Updated: Jun 17, 2011 4:29 PM ET Read 63 comments63 Back to accessibility links

While visible minorities make up 20 per cent of the population, only seven per cent of blood donors identify themselves that way, the agency said.

As part of National Blood Donor Week, Canadian Blood Services said it wants donors to better reflect the Chinese, South Asian and Filipino communities in Toronto and Vancouver.

In some rare instances, patients need a closer match than basic blood groups, which is more likely to succeed when the donor belongs to the same ethnic background.

But answering yes to one of several questions may mean a person is ineligible to donate blood, such as:

Not being able to speak English or French.

Visiting the United Kingdom, France or elsewhere in Europe for three months or more from 1980 to 1996.

Visiting Saudi Arabia for six months or more between 1980 and 1996.

Having malaria.

People who've visited a country that is considered in a malaria risk-zone are excluded for up to a year.

First-time blood donor Danny Cen says a language barrier does prevent some Chinese from giving. CBC

The language barrier does prevent some Chinese from giving blood, said first-time donor Danny Cen in Toronto.

"Some actually want to donate but then they don't know how to speak English," said Cen.

Translation option

The agency hopes to start providing translators for donors who speak Cantonese and Punjabi, said Tony Steed, director of marketing and recruitment for Canadian Blood Services in Ottawa.

Potential donors are not allowed to bring along their own translator for what Health Canada calls privacy reasons. CBS is applying to the regulator to allow Punjabi translators in Toronto and Cantonese translators in Vancouver.

"We are exploring the use of translators, for example, we have sign language," interpreters, Steed said.

Tim Wilson wanted to donate for the first time after seeing ads, but travelling to France 20 years ago meant he was turned away.

"I'm scared of needles, but I thought, 'I'm just going to deal with it,'" Wilson said. "It's really a shame, I would have liked to have donated."

Need for blood

Half of Canadian adults are eligible to donate blood but only one in 60 has.

Cardiovascular surgery can take five units of blood that would require five donors. Trauma from a car collision may require 50 units.

Source: Canadian Blood Services

Jake Hendren, 14, of Whitby, Ont., discovered he had a bleeding disorder called idiopathic thrombocytopenic purpura, or ITP, last July after he was playing football and developed black bruises everywhere within 45 minutes, said his mother, Jane Hendren.

Since then, Jake has needed nine infusions of platelets.

"It has been a rough year, and every time we have walked out of the hospital with confidence that my son is not getting any diseases," said Jane Hendren, who welcomes the criteria.

"They have restrictions for a reason, and the reason is to protect the safety of the patients like my son."

The blood agency's campaign aims to increase its base to 500,000 active blood donors and to recruit 100,000 new ones each year across Canada by 2015.

Tuesday, June 14, 2011

The Risks of Being Obese

This is what will happen if I do not loose weight. It's scary. I am hoping that by cutting and pasting this information into this post I will automatically start to loose weight. That's how it works right? Either way, this information is important for everyone to know.

1. Increased blood pressure (Hypertension)

50% of the people who have high blood pressure are obese. The most common accompanying disease of obesity is high blood pressure (hypertension). The NHANES-II study revealed that the occurrence of high blood pressure was three times higher in a group of 20-75 year olds with a BMI > 27 and six times higher with the 20-45 year old group. Other studies showed similar results. Weight loss usually leads to a decrease in the blood pressure values.

2. Type 2 Diabetes mellitus

80 % of diabetics are obese. There are numerous studies which reveal the connection between obesity and type 2 diabetes mellitus. The risk of getting diabetes is already increased if your BMI is in the higher normal weight range. The risk of developing diabetes is higher for those with the "apple type" or upper body fat distribution than with the "pear type" or lower body fat distribution. In addition to this, the risk of developing diabetes increases with the duration of obesity.

3. Fat metabolic disorders such as hyperlipidaemia (too many lipids in the blood) and dyslipidemia (disorder of the blood lipids levels)

50 % of people with fat metabolism disorders are obese. Most obese patients generally have an increase in the triglyceride levels in the blood which leads to the lowering of the HDL-cholesterol level. The total cholesterol and the LDL-cholesterol do not increase as dramatically as the triglyceride levels. LDL-cholesterol can become particularly problematic with abdominally obese patients (patients with "apple shaped" obesity).

4. Coronary heart disease, heart failure

The risk of getting a heart attack or dying from a heart attack increases the higher the BMI. Heart failure is one of the more common problems with obese patients from which many die from. The risk of getting cardiovascular illnesses is dependant on how long the person has been overweight. The development of heart failure is increased if the patient is also suffering from high blood pressure and type 2 diabetes mellitus.

5. Stroke

The risk of getting a stroke likewise increases the higher the BMI. For women, the risk of getting a stroke is 75% higher with a BMI >27 and 137% higher with a BMI of >32 than women who have a BMI in the normal range.

6. Mortality (death rate)

A BMI > 25 increases the mortality rate. The increase in the death rate is not so significant up to a BMI of 30. However, a BMI > 30 increases the death rate considerably, regardless of the causes. People affected the most are those with cardiovascular illnesses. They have a 50-100% higher death rate than people with a BMI between 20 and 25.

7. Sleep apnoea syndrome (cessation of breathing during sleep)

One of the main risk factors of being overweight is the development of the sleep apnoea syndrome. About two-thirds of all sleep apnoea syndrome patients are obese.

8. Gout

An increasing body weight concurrently increases the risk of developing gout. Many studies have shown that there is an interaction between the weight and the uric acid production in the blood. The waist/hip circumference correlates more with the increase of the uric acid concentration in the serum, than it does with the weight.

9. Gall bladder disorder

One of the risk factors of obesity is the increased risk of developing gall stones.

10. Orthopaedic complications

Obesity promotes arthritis and back pain as a result of the excessive strain on the spine and the lower extremities (thigh, leg, foot and knee cap).

11. Psychosocial complications

Psychosocial complications are usually caused by the negative societal opinions towards being overweight. As a result of the youth and fitness orientation in the last few decades the view towards obese people has gotten worse. The consequence was that discrimination towards overweight people increased. People who are overweight often do not fit into social circles; they are regarded as unfriendly and less attractive. It has been proven that weight also has an impact on the average income and career opportunities. Overweight people are usually described as "weak-minded", clumsy" and "ugly".

Saturday, June 4, 2011

Walk to Cure Diabetes

So, as you know I had a lot of family support last weekend at Rendez Vous. Looking around the room at seeing my family there to support made me feel great and it made me realize that although I can't cure Hemophilia or any disease for that matter all by myself I can support those who are trying to make the world a better place.
My friend Michelle is participating in a Walk to help support research for diabetes. Please take a moment to read Michelle's story I know it will inspire you to participate in the walk or even give a donation to the cause.
I am planning on participating because Michelle is one of the most kind and caring people I have ever met in my life. She was my sponsor when I decided to become a catholic about two years ago. Since then she has been such a wonderful friend to me and I'm so happy that there is now a way for me to be supportive of her.

Hi everyone!

That was the JDRF/Telus Walk to Cure Diabetes slogan when we participated in this event two years ago: We Are Walking for Max. This year we are again participating in the Walk, and are writing to you now to ask for your support.

The Juvenile Diabetes Research Foundation (JDRF) is a charitable organization which funds research into the prevention, management, and cure of Type 1 Diabetes. As many of you know, our son, Max has had Type 1 Diabetes for almost three years now. JDRF has been a huge positive force in our lives during that time, and we are confident that when a cure is found, it will be because of the research projects supported by JDRF. And when that happens, we want to know that we have done our part to make that a reality.

So we are participating in the Walk on June 12, 2011 (12 days from now) and are asking again for your support, in whatever way you are able. For those of you who would like to contribute your time, you are welcome to join us in Stanley Park in Calgary on Walk day (please contact us so that we can give you the hows and whens). For those of you who would like to financially support JDRF's work, you can click on the "Support Me" button on our Walk page (see link below). And for those of you who would like to support us in prayer, we would be grateful for prayers for Max and Gemma, as well as for advancements in the area of diabetes research.

We invite you to visit our personal Telus Walk page for more information about our family, the Walk and JDRF (click on the Support Me link below). We thank you all for everything (time, finances, and prayers) – we couldn't do this (the Walk, and also daily life) without you! -Michelle, Dean, Max and Gemma.

Friday, June 3, 2011

Hope for HIV

Sadly, a part of our Hemophiliac history includes HIV and AIDS from the tainted blood that a lot of Hemophiliacs recieved in the 1980's and early 1990's. I am sad to say that I know of far too many Hemophiliacs that have been affected by HIV and AIDS that is why it does give me hope for them to read articles like this. It's not very often that you get to to a disease be cured in your lifetime so hopefully with more reasearch and funding things like Hemophilia and HIV can be things of the past.
Please take a minute to read to following article.