Do You Know the Signs and Symptoms of von Willebrand Disease (VWD)?

Leading Health Information Source for Women Introduces Educational Materials About Most Common Bleeding Disorder

 RED BANK, N.J., April 18, 2012 /PRNewswire/ – Although von Willebrand disease (VWD) is the most common hereditary bleeding disorder in the United States, affecting up to 1 percent of the population, it is often misdiagnosed or under-diagnosed in women. HealthyWomen, the nation’s leading nonprofit health information source for women, has developed new educational materials they hope will shine a light on a disorder that, when undiagnosed and untreated, can severely impact the quality of life for women. 

Caused when von Willebrand factor, a protein in the blood that is necessary for clotting, is either missing or not working properly, VWD affects men and women equally. Yet, when undiagnosed and untreated in women, it puts them at a greater risk for life-threatening bleeding following childbirth and for undergoing unnecessary hysterectomies.  

“Undiagnosed bleeding disorders, like von Willebrand disease, can have real health consequences for women,” said Elizabeth Battaglino Cahill, RN, executive director of HealthyWomen. “The goal of these new materials, available on HealthyWomen.org, is to spark honest conversations among mothers, sisters and daughters about the signs and symptoms of VWD and to hopefully underscore the need for even more education about this condition.”

The five signs and symptoms of von Willebrand disease are:

• Easy bruising
• Frequent or prolonged nosebleeds
• Heavy, prolonged menstruation
• Prolonged bleeding following injury or surgery
• Prolonged bleeding during dental procedures

“Because VWD is a hereditary disorder, many women dismiss tell-tale signs like easy bruising or heavy periods as normal because their mother or other female relatives experienced similar symptoms,” said Meera Chitlur, M.D., Director, Hemophilia Treatment Center and Hemostasis Program, Children’s Hospital of Michigan and who also works with the Foundation for Women & Girls with Blood Disorders (FWGBD), a non-profit advocacy and education organization dedicated to advancing physician and healthcare provider knowledge of the unique needs and challenges faced by women and adolescent girls with blood disorders.  “Unexplained bleeding or bruising is not normal and is something you should always discuss with your healthcare provider. If you are diagnosed with a bleeding disorder, treatments are available.”

The new materials include common questions about VWD answered by an expert, as well as real-life stories of women living with the condition. One of these women, Kristin Prior, 49, recalls her own diagnosis in 1996.

“While I had experienced many of the five signs and symptoms throughout early adulthood it wasn’t until I was 32 that I finally received my diagnosis of von Willebrand disease,” said Prior. “My hope is that women who are facing some of the same challenges that I did will read my story on HealthyWomen.org and realize that diagnosis and treatment can make a tremendous difference in their lives.”  

The von Willebrand disease educational resources were developed through an educational grant from CSL Behring, a world leader in developing and manufacturing safe and effective solutions to treat and manage bleeding disorders.

About HealthyWomen

HealthyWomen (HW) is the nation’s leading nonprofit health information source for women. For more than 20 years, women have been coming to HW for answers to their most pressing and personal health care questions. HW provides health information through a wide array of online content and print publications that are original, objective and reviewed and approved by medical experts. Its website, www.HealthyWomen.org®, was recognized by ForbesWoman as one of the “Top 100 Websites for Women” in 2010 and 2011 and was named the top women’s health website by Dr. Mehmet Oz in O, The Oprah Magazine. To learn more, visit www.HealthyWomen.org.

About the Foundation for Women & Girls with Blood Disorders

The Foundation for Women & Girls with Blood Disorders (FWGBD) is a non-profit advocacy and education organization dedicated to advancing physician and healthcare provider knowledge of the unique needs and challenges faced by women and adolescent girls with blood disorders.  Founded in 2010, the Foundation’s mission is to ensure that all women and adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage.  For more information, please visit www.fwgbd.org.

About CSL Behring

CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant therapies worldwide. CSL Behring therapies are indicated for the treatment of coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in newborns. CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL Limited (ASX: CSL), a biopharmaceutical company headquartered in Melbourne, Australia. For more information, visit http://www.cslbehring.com/.

Contact

Erin Graves, Director of Communications and New Media
HealthyWomen
(732) 978-4947
egraves@HealthyWomen.org

Lauren Abel
MCS Public Relations on behalf of HealthyWomen and CSL Behring
(800) 477-9626
laurena@mcspr.com

 

SOURCE HealthyWomen

For Original Article click here.

World Hemophilia Day – April 17 2012

Reasons to Participate in World Hemophilia Day 2012:

 

1. Raise awareness of inherited bleeding disorders in your community.

2. Build support for your organization and mission.

3. Support advocacy efforts with government officials.

4. Participate in our global caring community.

5. Support your patient group or local chapter.

6. Spread the word about the global needs for people with bleeding disorders in developing countries.

7. Educate new patients and their families.

8. Attract more volunteers and members.

9. Raise funds to support your activities.

10. Support your hemophilia treatment centre.

11. Adapt the World Hemophilia Day theme to further your own needs.

12. Support the World Federation of Hemophilia and its vision of Treatment for All.

 

For additional materials please visit  www.wfh.org/whd/en

Living with Hemophilia Video

Here’s a video that helps in the understand of and living with Hemophilia. A healthy attitude goes a long way.

How to Live with Hemophilia

Movie – THICKER THAN WATER (2009)

Link here.   Review here.

SYNOPSIS:

Tony is 11 years old. Hockey is his “absolutely, positively” favorite sport; and he is about to play his last game. Like his father and his father’s father, Tony has spent many of his best hours on the ice. Like his mother’s brother, Tony has severe hemophilia. The frequent scratches and bruises that mark the childhoods of active kids seem harmless to the healthy, but these same small injuries can be debilitating or fatal to a hemophiliac. Undeterred by a family history of chronic illness and loss, Tony’s parents continue to support and encourage his ambitions. Thicker Than Water is a documentary about dealing with chronic illness, living life to the fullest and playing your last game as well as you can.

It’s World Hemophilia Day – April 17, 2011

Do what you can today to spread the word and knowledge of Hemophilia around the world.

Facebook

World Federation of Hemophilia

Wikipedia

Hemaware – National Hemophilia Foundation

You can also spread the word by texting and e-mailing friends. Send out tweets and update your Facebook status with your plans for World Hemophilia Day. Wear red on World Hemophilia Day to show your support for the bleeding disorders community.

The Legacy of World Hemophilia Day

WFH chose April 17 as World Hemophilia Day to honor its founder, Frank Schnabel, on his birthday. What began in 1989, World Hemophilia Day’s inaugural year, has grown into a global event. “Be Inspired, Get Involved” on April 17, 2011!

Women Have Bleeding Disorders Too

Original Post   – Does this story sound familiar?

This is a guest post from the NSF Becoming the Messenger workshop by Diane Kholos Wysocki, Ph.D., University of Nebraska, Kearney, Department of Sociology.

I can’t even begin to say how many times I have heard the statement “you must be a mutant, only men can have a bleeding disorder….not women!”  And I believed those individuals because they were doctors and nurses and other medical professionals.  I believed them because I didn’t know better and because I had been socialized to trust people, especially males, who had both the education and some kind of authority over me and my health.

It should have been obvious from the beginning.  But it wasn’t. I had a relatively normal birth and my childhood was basically non-eventful.  At least, that’s what everyone thought.  I had the normal bumps and bruises that were the result of the activities I participated in.  However, when I bruised …. I really bruised and my skin stayed bruised for a very long time.  Sometimes, my legs looked like I had been in a fight.…and of course it looked like I lost the battle.

I started my period when I was nine years old.  I was prepared for my cycle to begin and I even remember being excited at this change in my body.  However, I also remember it being painful, bleeding a tremendous amount, and needing to change sanitary pads all the time.  At the time I didn’t think this was a problem and I thought it was normal for girls to have to change their clothing during their periods and have blood running down their legs.   Sometimes, I had to stay home from school because the symptoms were so severe.  My mother took me to the gynecologist at a very early age because of the bleeding and pain and I remember the experience as being both frightening and degrading.   I was placed on birth control pills by the age of 13.  This relieved some of my symptoms, but not enough of them.  I now know this is a common course of treatment, because increasing estrogen increases the body’s ability to clot.When I was 16 I had to have my tonsils removed.  Surgery went fine, but post operatively, I needed to be taken back because I was bleeding.  My mother tells me now, that this was her first indication that something was wrong with me.  But still, the doctor made no suggestions to her and looked no farther into why I was bleeding.   A few years later I had my wisdom teeth pulled and just like my tonsils, I had to return to the doctor to have my gums packed in order to slow down the oozing.

Bleeding problems continued with the birth of my children as well as miscarriages.  Because I continued to bleed, I had numerous D&C’s that should have stopped my bleeding problems, but they didn’t.   Still no one investigated the bleeding as a problem, but kept treating my problems as hormonal.  Finally in 1983, my doctor decided to do a D&C and a lapraspope, known as the “band-aid” surgery because it only requires two tiny incisions in the belly button and just above the pubic hairline.   That night I hemorrhaged internally and bled throughout the night.   I required many units of blood by the next morning and was given the “cure” that is given to most women with the types of symptoms I showed, a hysterectomy.   I was twenty-eight years old.

I went on with my life thinking I was really strange and that I was the only woman with a bleeding disorder. I was in isolation.  In 1991, I needed sinus surgery.  I was really apprehensive about the surgery, but since my sinuses were closed, I had to go through with it.  The surgeon referred me to a hematologist.  I told him that it seemed strange, but that I didn’t bleed right away, but instead would bleed a few days later.  The hematologist, who was not associated with a Hemophilia Treatment Center, told me I was a “nervous Nellie” and that he was sure he could handle me and any problems that came up.  So, contrary to the little voice inside my head that told me to “run, find another doctor without an ego problem and one who will believe you” I went through with the surgery, only to go home and bleed.  I returned to the hospital and needed to have blood products given once again to help me clot. I spent a total of 11 days in the hospital for a procedure that should have been done as an outpatient.

My life turned around in 1995 when I found literature from the Hemophilia Society of Colorado and called them for information.  I was told that there were other women with bleeding disorders and was sent more literature to read over.  It became apparent that, I was not alone!

At the same time I was finishing my Ph.D. in sociology from the University of California in Santa Barbara.  With my new found knowledge that I was not a mutant, that women have bleeding disorders, but often go misdiagnosed or undiagnosed, I began researching the area of women with bleeding disorders. I was finally diagnosed correctly at the age of 39 with von Willebrand’s Disease (vWD), which is the most common cause of lifelong bleeding problems in women.  Although it is impossible to know how many people have this disease, it is believed that 1 to 3 of every 100 persons (both men and women) are affected.  The symptoms of vWD include easy bruising from mucous membranes such as the mouth, nose, gastrointestinal tract, and uterus, and excessive or prolonged bleeding after surgery or dental work.

In 1996 I began communicating with women who suffered from all kinds of bleeding disorders in order to investigate their psychosocial and gynecological issues from their own perspective. I came into contact with women at hemophilia conferences, through various Internet bulletin boards such as Hemophilia Support, from advertisements about my project in magazines specifically for the hemophilia community like Belongings or Hemolog and in hemophilia chapter newsletters around the country, from my Internet web page, and through ‘word of mouth.’  I received responses from women who had either vWD (69.8%) or another type of bleeding disorder (30.2%) that included those with Factor I,V,VII, VIII,IX, “Free Bleeders” and Symptomatic Carriers (This is what the women were told by their doctors.  Most of the women were not seen by HTC’s, but rather GP’s, Internets, or GYN’s who were not trained in bleeding disorders.)  The women in this study were predominantly Caucasian (92%), were currently married (66.7%), had children (68.9%), and of those women who had children, the majority of their children (67.9%), both boys and girls, as well as other family members (63.3%) had some type of bleeding disorder (To see the entire article see the May 1999 issue of The Female Patient).

Furthermore, findings revealed there was on average, almost a 15-year gap between the first bleeding episode and the diagnosis of a bleeding disorder.  Women reported long, heavy menstrual cycles with the days of actual bleeding that ran anywhere from 3 to 45 days and the number of days between actual bleeding was 2 to 60 days.   The majority of respondents reported very heavy periods, using large amounts of tampons and sanitary pads during each cycle and having periods that became worse as time went on.

Treatments for menstrual bleeding included D & C’s (42.9%).  One respondent reported having six D & C’s to determine the cause of her abnormal bleeding without any tests to investigate a possible coagulation disorder.   When a D & C didn’t work to stop the menstrual bleeding a hysterectomy (42.2%) was performed.  Unfortunately the referrals to Hemophilia Treatment Centers for a consultation were rare and only happened in 58.7% of the respondents.  However, on average the women in this study were not seen at a HTC until the age of almost 29 years old.  That left many years to be undiagnosed, misdiagnosed and mistreated.

For More Information

National Hemophilia Association

Bill aims to stop specialty tier prescription drug costs

From: Carolyn Johnson, ABC7 San Francisco, CA 

Follow the above link for a video or click here.

SAN FRANCISCO (KGO) — There’s a new trend in health insurance to pass along the costs of the highest price medications to patients. Instead of a co-pay, patients are finding expensive drugs for cancer, arthritis and multiple sclerosis can cost them hundreds, even thousands of dollars out of pocket each month, but a Bay Area lawmaker is working to change that.

 

“My neurologist said, ‘You need to let your insurance company know that every day that goes by that you don’t take this drug, they are costing you neurological function,’” said MS patient Melanie Rowen.

That drug Rowen needed to manage her MS cost her nearly $700 a month. Her insurance classified it as a specialty tier drug, also known as Tier 4. That means she pays 30 percent of the cost of the drug rather than a simple co-pay.

When asked how she made it work financially, Rowen said, “I went into credit card debt.”

“What we’re hearing is things such as, ‘What do I do? Do I pay my mortgage?’ or ‘Do I go into debt?’ which is a common thing, people are going into debt or they’re going without some of the essentials of life,” said Stewart Ferry, the public policy director for the National MS Society.

Of the 12 most common Tier 4 drugs, four are used to treat MS.

“They’re just so frustrated because they’re paying their premiums and this runs completely counter to what insurance is supposed to be about, which is equitably spreading the risk. So this is antithetical to the very nature of insurance,” said Ferry.

Specialty tier pricing started under Medicare Part D. Michelle Vogel is executive director of the Alliance for Plasma Therapies and has been tracking the impact.

“Whatever happens with Medicare typically follows in private insurance, so when I was looking at the private plans, and especially in California, you’re seeing the majority of plans have put in Tier 4 plans,” said Vogel.

There’s a wide range of illnesses and diseases impacted by this change: cancer, rheumatoid arthritis, even hemophilia and organ transplantation.

“If you get a transplant, but the anti-rejection drug is too expensive to pay for, then why bother transplanting to begin with? You’ll die without that organ,” said Vogel.

“Sixty-one percent of Americans take some sort of prescription medication a day. So it is alarming when health plans are reclassifying drugs into a new Tier 4 category,” said Assm. Fiona Ma, D-San Francisco.

Ma is proposing legislation in California to prevent health insurers from moving vital medications to Tier 4 status.

“What we’re trying to do is make sure that patients are able to afford the medication they need. So we are going to look at a cap system as well as cost containment for the individuals who are on medication,” said Ma.

“What the cost is of a given drug starts with the manufacturer. We ought to look there and then both the health plan and the individual have roles to play in contributing to the cost of the drug,” said Patrick Johnston, CEO of the California Association of Health Plans.

Johnston is concerned about legislation that prevents cost sharing.

“If we have a drug co-pay that is tiered, then we can control the cost and make it more likely that more people can afford insurance,” said Johnston.

But a growing number of patients like Rowen are finding themselves facing a huge financial burden simply to get the drugs their doctors have prescribed.

“The stakes are high and nobody who has any choice about it is going to choose not to take them. It’s absolutely out of the question,” said Rowen.

Right now, New York is the only state with a law preventing specialty tiers. Ma plans to announce the specifics of her legislation on Thursday. However, state legislation does not impact self-funded health plans which cover about half of all employees with health insurance. Federal legislation is needed to change that.

(Copyright ©2011 KGO-TV/DT. All Rights Reserved.)

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ABC7 Poll

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Washington Days 2011

Washington Days 2011 is fast approaching – February 16 – 18, 2011!  This is your opportunity to put a face on bleeding disorders for elected officials in Congress and to have your voices heard on key issues that affect you and your family.  
The program will once again commence Wednesday evening with a review of the issues followed by a networking reception.  On Thursday we hit the Hill for a full day of face-to-face meetings with members of Congress and their staff to share personal stories and ask for support.  On Friday, attendees may participate in a training and discussion designed to explore issues and improve our effectiveness on the state level.  New this year is a special dinner and presentation following the Hill visits on Thursday. 
For more information about registration, hotel and the program, click here.

NHF Launches Victory for Women Initiative

New York (PRWEB)
November 16, 2010

The National Hemophilia Foundation (NHF) launched its new initiative, Victory for Women, at their 62nd Annual Meeting in New Orleans, November 11 through 13. Since most women affected by the most common hereditary bleeding disorder, von Willebrand disease (VWD), don’t even know they have it, the campaign is designed to generate awareness outside of the bleeding community and empower women to seek accurate diagnosis and healthcare.

At the center of the campaign is the music video, “Victory for Women,” featuring emerging contemporary musical artist, Jessica Rae, who also composed the music. The song uses a catchy tune and an emotional appeal to build awareness of and goodwill toward NHF. Tom Jordan, an award winning creative director at Hoffman York with a portfolio of original music, wrote the upbeat and optimistic lyrics to unite and evoke emotion among women with blood disorders. Kevin Kalausakas was brought on to add the visual element as the music video producer. The goal of the video is for people to “spread the word” about blood disorders through the various new communications and social media channels (Facebook, Twitter, etc.) and spark concern in women to protect their bodies and to form a community in which women with these blood disorders can turn to for support.

Also featured in the video is a maroon, silk scarf that was created for the Victory for Women initiative to serve as a symbol of unity and support for women with blood disorders. To view the video visit, http://on.fb.me/boW63k.

“We believe in the power of music to stir emotion and help people open their hearts to this incredible cause,” said Jordan. “We used the scarf in the video to show women they’re not alone.”

At the annual meeting, NHF also recognized three fashion, film and television luminaries for their efforts in helping put hemophilia and other bleeding disorders in the spotlight. Patrick McMullan, the famed New York City nightlife photographer and Vanity Fair contributing editor, was honored for donating his photography skills to create a “Faces of Women with Bleeding Disorders” calendar for the Victory for Women campaign featuring women with bleeding disorders wearing the maroon, silk scarf. McMullan’s efforts are fueled by his passion to keep his sister’s memory alive. Doreen McMullan McCarthy, who died in 1979 from complications of von Willebrand disease, is featured in “Iron Butterfly,” the cover story for the Fall 2010 issue of HemAware, NHF’s award-winning magazine and can be viewed at http://www.hemaware.org.

Creator and producer of USA Network TV show “Royal Pains” Andrew Lenchewski and his father, Dr. Enrique Lenchewski were recognized for creating the popular character Tucker Bryant, a teenager with hemophilia and Emmy Award-winning film producer, Marilyn Ness, was recognized for her documentary “Bad Blood: A Cautionary Tale.”

As the largest bleeding disorders conference in the country, NHF’s Annual Meeting was attended by more than 2,000 guests, including consumers, healthcare providers, researchers, industry representatives, and NHF chapter/association staff from across the country, and other global nonprofit organizations. Making the conference a great opportunity to kick off the Victory for Women initiative and start raising awareness about blood disorders affecting women.

NHF hopes to raise awareness of the Victory for Women initiative outside the bleeding disorders community through social media channels with Americans sharing this message with friends and family. To be a part of Victory for Women follow the cause on Facebook and Twitter. To view the “Victory for Women” music video check out the NHF YouTube channel or visit http://on.fb.me/boW63k.

For more information about the Victory for Women initiative or to make a donation, visit http://www.victoryforwomen.org. Donations of $15 receive the “Faces of Women with Bleeding Disorders” calendar; donations of $20 receive the red, silk scarf featured in the video and in the calendar.

About the National Hemophilia Foundation
The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has 46 chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). For more information about the National Hemophilia Foundation and bleeding disorders visit http://www.hemophilia.org.

About von Willebrand disease
Von Willebrand disease is a genetic bleeding disorder that prevents blood from clotting properly. This disorder can be far more serious in women, and is often undetected. While von Willebrand disease is the most common bleeding disorder, girls and women may suffer from other more rare bleeding disorders including platelet abnormalities. Women who are carriers for hemophilia may also experience symptoms consistent with mild hemophilia. For more information, visit http://www.victoryforwomen.org.

Book Review: Dying in Vein

Name:  Dying in Vein: Blood, Deception … Justice

Description:

Photographer Kathy Seward MacKay and writer Stacy Milbouer bring to light one of the worst preventable medical disasters in United States history – the spread of the AIDS and hepatitis
viruses through the nation’s blood supply and its devastating effects on the world’s population of hemophiliacs and their families. Approximately 100,000 hemophiliacs were infected with the viruses.

The documentation of this tragedy is provided in a 1995 independent study by the Institute of Medicine – part of the National Academy of Sciences. In the report, medical experts estimated that up to 70 percent of the HIV infections in hemophiliacs may have been prevented had the FDA and the pharmaceutical companies acted when the warnings signs were evident in the early 1980s.

A timeline in “Dying in Vein” gives an overview of the blood supply problems, beginning with the first known outbreak of hepatitis in the 1940s. It is easy to see that decades later the deaths of thousands of people with bleeding disorders were largely a result of corporate greed by four pharmaceutical companies and FDA regulatory failure.

Mission Statement:

After the death of my 33-year-old husband, a hemophiliac infected by tainted blood products, I wanted to use my skills as a photographer to show the pain and suffering of the victims and the families of the blood-supply crisis within the hemophilia community. I wanted to tell the story with candid, real-life moments. It was also important for me to capture the fervent activism in this community, the everyday life of infected hemophiliacs and the strength of the human spirit. I wanted the people responsible for this travesty to see the toll their actions and decisions had on the lives of their victims. And I wanted to inspire those who saw these photographs to think, feel, maybe even act in response to it.

For my husband, David, living with the cloud of HIV over his head, was not an easy task, yet he lived a full life. As a special education teacher, he touched many lives and sent his students on the path to productivity, rather than ruin. The ripple effects of his contributions are still seen today. Yet, he died too young and his two sons have suffered from the absence of a father since the ages of 4 and 8.

While David was alive, he often suggested that I document the plight of an HIV-positive hemophiliac. He knew there was a whole generation of people with bleeding disorders who faced extinction. For me however, this was a topic I just did not want to cover – it was too close to home. I didn’t want to draw attention to the issue. I wanted to try to live a “normal” life. We believed he would remain one of the long-term survivors of HIV. Then, after he very suddenly died of liver failure from hepatitis C in 1997, I was thrown into the world of hemophilia, injustice and activism. I quickly learned that this horrific tragedy could have been prevented if it weren’t for corporate greed and the immoral decisions within our federal Public Health Service.

As a photographer, I could no longer ignore such an important story. I felt obligated to do my part for the cause. My main goal was to educate the public and to do my small part in preventing another tragedy of this nature. I soon realized how important it was to provide a voice to those who felt the government and the press ignored their stories.

“Dying in Vein” is for those victims of the blood supply crisis: Those who have perished. Those who are suffering. And those who have survived the death of their loved ones.

Dying in Vein is also for all healthcare consumers: Those who rely on drug companies to make the right decisions for us. Those who rely on the FDA to make the right decisions for us. And those who rely on doctors to make the right decisions for us.

Link to FaceBook page, here.