2011 Calendar of Events

May 13, 2011 Golf Tournament Tara Hills

1410 Western Hills Dr, Papillion, NE

May 13 – 15, 2011 HHA Annual Meeting

June 25, 2011 Annual Disc Golf Tournament

August 20, 2011 Biker’s Out For Blood Poker Run

Papa Joe’s Missouri Valley, IA

September TBA

October 22, 2011 Craft Auction

Danish Vennelyst Park in Omaha, NE

November 10 – 12, 2011 NHF Annual Meeting held in Chicago, IL

December 3, 2011 HHA Christmas Party

Heartland Hemophilia Board Members:

Sheila Campbell President Angie Long Vice President

Betty Wonder Secretary Connie Thomas Treasurer

The Heartland Hemophilia Association is a non-profit organization. Material provided in this newsletter is for general information only. The HHA neither gives medical advice nor engages in the practice of medicine. The HHA under no circumstances recommends a particular treatment for specific individuals and in all cases recommends you consult your physician or HTC before pursuing any course of treatment.

Community Talk with Novo Nordisk

We were invited to dinner by Novo Nordisk and their representative Mark Hunter. Mark brought with him a representative from Chicago HTC. She was very informative about insurance. She talked about cobra and how to address it if you lose your insurance, different programs that pharmaceutical and homecare companies have available for their patients if there is a loss of insurance.  She also discussed the new changes in the insurance industry. There is help out there, but you must seek it most of the time. Keep a network going with you healthcare company, friends and associates.

We at Heartland Hemophilia Association have also helped with patient’s insurance payment, a house or rent payment, a camp for hemophilia or vonWillebrand patient, utilities, or even a car payment now and then. I have to admit there are times I think it is time to retire and then I think back on some of the families we have helped in the past and what would they have done without our help.

Craft Auction

The craft auction was a very pleasant success this year; we went back to the original idea, the last two years we have combined it with entertainment. WE are working on some new ideas for 2011. Last year I made a huge Santa Claus face afghan. I was a little worried about the price that was bid; we had it on the silent auction table. I think we did pretty well with the economy the way it is.

We want to thank every one who sent something or brought something for this event. ARJ and Biomed for their support. We are still looking for some new ideas for 2011, if you have any please call Betty 402-319-7933.

Christmas Party

We had a carnival set up for the children, to win tickets that they could use to buy items from a table we had set up. We had our usual game of bingo and every one brought a gift for prizes, for this event, and if it was something you couldn’t use, you could re-gift the item to a family member or a friend. We would like to thank Eileen’s Colossal Cookies donated cookies for the small ones to frost and decorate.  We would also like to thank CSL Behring and their representative Kent Pointer  for being there and supporting our event and providing lunch. It was really great time.

Saturday evening Pfizer and their representative Deb Melhado provided dinner. Deb explained to the group about Xyntha product manufactured by Pfizer for factor VIII patients and the pre-filled Dual Chamber Syringe.

FXI deficiency is considered a very rare bleeding disorder. Estimates of its prevalence range from 1 in 100,000 to 1 in one million. Among Ashkenazi Jews, however, the disorder affects approximately 8% of the population. So few patients have factor XI in the U S that many providers and even some hematologist have little or no exposure to it.

Factor XI is a clotting protein that participates in clot formation in the blood and indirectly preventing its break down.

Unlike factor VIII or IX deficiencies the level of factor XI in the blood doesn’t necessarily correlate with its bleeding severity in the patient.

" What is Characteristic of factor XI deficiency with a level of less than 1% and be asymptomatics. On the other hand, you can have a level in the 30% to 40 % range and have bleeding," says Ann Hurlet-Jensen M D

Since FXI is not liked to the X Chromosome, men and women have an equal chance of inheriting it from their carrier parents.

Factor XI deficiency is considered autosomal recessive, which means that unlike FactorVIII or Factor IX deficiency, you have to inherit it from both of your parents. Say Constance Gibb.

Diagnosing the disease when seeing a patient with history of bleeding, we recommend a work up that includes the patient the platelet count, pt, a ptt, von Willebrand disease. If things come back abnormal next step is to assay factors VIII and IX , if the results of this test back normal then a FXI assay is done.

Symptoms of FXI patients do not experience spontaneous Bleeds or joint bleeds. Instead their symptoms result from injury or surgery in areas of the body that have high Fibrinolytic activity, where the body tries to break down fibrin, the main component of clots. Such areas include the Mucous membranes of the mouth , nose, throat and genital systems. Nose bleeds are a common symptom for some FXI patients.

Another confounding factor for FXI patients is that bleeding doesn’t always occur right away after surgery for instance, it can take hours or days for bleeding to begin. Low FVIII and vonWillebrand levels can produce a higher risk for bleeding in some patients with FXI

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HHA Golf Fundraiser Tournament Information:

I / We wish to play GOLF • $65.00 per person or $260 per team if paid by May 1st

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Crazy Mixed-Up Chicken Pasta Casserole

Mix up macaroni, chicken, and vegetables the night before. Then pop this casserole in the oven for a dinner dish that will make everyone crazy for more!

Non-stick cooking spray

2 cans (10 3/4 ounces each) condensed cream of mushroom soup

2 cups uncooked elbow macaroni

2 cans (10 oz.) premium chunk breast of chicken, drained

2 cups low-fat milk

1 can (8 ounces) sliced water chestnuts, drained

1 can (7 ounces) sliced mushrooms, drained

1/2 each red and green bell pepper, coarsely chopped

1/2 cup sliced scallions

1 1/2 cups shredded reduced-fat or regular sharp cheddar cheese

Spray a 9 x 13 baking dish with cooking spray. Mix the soup, macaroni, chicken chunks, milk, water chestnuts, mushrooms, bell peppers, scallions, and 1 cup of cheese in the baking dish. Spread evenly and sprinkle with the remaining cheese. Cover and refrigerate at least 8 hours.

Heat the oven to 350 degrees F. Uncover the casserole and place it in the oven. Bake for 1 hour, until hot and bubbly.

Serves 6. Per serving: calories 452; fat 12 g; cholesterol 59 mg; sodium 731 mg; carbohydrate 48 g; fiber 4 g

www.mealtime.org

LIFE

Today after reading a story about "Keeping the Faith" It sent me on an old memory road. The story is about a young man and his struggle with hemophilia. His family members always reminding him of his uncle Charlie and the fact he has been watching over him since he was born. He never met his uncle, because he passed away a few years before he was born. But as he grew older and learn the reality of Santa Claus, Easter Bunny and the tooth fairy, he began to have doubts about Charlie’s present in his life. Of course he had the same feelings that most children have when they are limited to the things they are aloud to do while growing up with a disability. The fact they have to take medicine on regular bases. And deal with the pain and discomfort that comes with hemophilia.

The family members share with him a sign that they felt came from Charlie to let them know he had not forgotten about them and was near if they need his support.

Now I do believe that those that go before us are waiting for us to meet again, and with the help of the lord get us through our tough times.

I have a niece who was born with M S and she has always had to have crutches or a wheel chair to get around. When she was in her teens I asked her what she disliked about her disability. Her answer really surprised me. She didn’t like the feeling of people starring at her or parents who rushed their children away like she had some kind of disease that they might catch.

I have had hemophilia in my family since 1981. I understand that there is pain and the ordeal of having to have shots on an every day bases. With our group it’s not like you have two or three people that have the same thing to hang out with, like a lot of diseases or diseases.

What can we do to help with the reality of the whole thing? Maybe when they reach the age of reason, take a trip to a medical facility with small children who have arthritis or a facility with patients that have lost arms or legs. Arrange a trip to visit patients with diabetes who may also have to inject their medicines.

They say a picture is worth a thousand words, Kids need to see this some times just to know they aren’t the only ones who have problems to deal with.

And then they have to consider the consequences of their action. So I don’t take my medicine as soon as possible after an injury or I might skip taking my medicine today because I feel fine.

MARK YOUR CALENDARS

HHA Disc Golf Event June 25, 2011

The disc golf tournament will be held at Seymour Smith Park with registration beginning at 10:00 a.m. Registration details contact Rita at (402) 203-9870 or Dawn Wonder at (402) 960-3600 a four person team $180.00, individual is $45.00 which includes lunch & drinks, a disc and a t-shirt.

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7 Hours of Sleep - No More, No Less

People who sleep more than 7 hours a day or fewer hours than that, including naps, are increasing their risk for cardiovascular disease. Heart disease is the leading cause of death in the U.S. Sleeping fewer than 5 hours a day, including naps, more than doubles the risk of being diagnosed with angina (chest pain), coronary heart disease, heart attack or stroke, according to the study conducted by researchers at West Virginia University.

And sleeping more than 7 hours also increases the risk of cardiovascular disease, the study found.

The most at-risk group was adults under 60 who slept 5 hours or fewer a night. They increased their risk of developing heart disease more than threefold compared to people who sleep 7 hours. Women who skimped on sleep, getting 5 hours or fewer a day, including naps, were more than two-and-a-half times as likely to develop cardiovascular disease.

Why? The researchers did not know. But they pointed out that sleep duration affects endocrine and metabolic functions, and lack of sleep can lead to diabetes-related issues and high blood pressure, all of which increase the risk of hardening the arteries.

Not to worry. You can catch up on lost sleep. A separate study showed that an occasional long sleep-in on a weekend can help people who can’t avoid getting too little sleep, especially during the workweek.

Consider these 5 areas and see how you can lessen the stress in your world.

Heartland Hemophilia Association

P. O. Box 12499

Omaha, NE 68112

www.heartlandhemophilia.com

ADDRESS CORRECTION REQUESTED

In an effort to save paper and printing costs, the HHA Newsletter will now be distributed to our website www.heartlandhemophilia.com

If for some reason you cannot access websites we would be happy to send the newsletter to your mailing address. Please send your information in regards to the newsletter mailing to dwonder1@cox.net