• May is here!

    May is here!

    May Splash

    May is the month for Ehlers-Danlos Syndrome awarness worldwide! Wear your stripes and create awareness for those with EDS.

  • Education Advocacy

    Education Advocacy

    Do you have a child in Public School that is having difficulties to be successful and achieve their potential? Is the school not appreciating your wishes and goals for your

    Read More
  • Legal Advocacy

    Legal Advocacy

    Recently the alligations of abuse and neglect is on a huge climb in the Ehlers-Danlos Syndrome community. Most of the times it is due to the fact the doctors making

    Read More
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Introduction

Von Willebrand disease (VWD) is an inherited bleeding disorder that is caused by deficiency or dysfunction of von Willebrand factor (VWF), a plasma protein that mediates the initial adhesion of platelets at sites of vascular injury and also binds and stabilizes blood clotting factor VIII (FVIII) in the circulation. Therefore, defects in VWF can cause bleeding by impairing platelet adhesion or by reducing the concentration of FVIII.

VWD is a relatively common cause of bleeding, but the prevalence varies considerably among studies and depends strongly on the case definition that is used. VWD prevalence has been estimated in several countries on the basis of the number of symptomatic patients seen at hemostasis centers, and the values range from roughly 23 to 110 per million population (0.0023 to 0.01 percent).

The prevalence of VWD also has been estimated by screening populations to identify persons with bleeding symptoms, low VWF levels, and similarly affected family members. This population-based approach has yielded estimates for VWD prevalence of 0.6 percent, 0.8 percent, and 1.3 percent—more than two orders of magnitude higher than the values arrived at by surveys of hemostasis centers.

The discrepancies between the methods for estimating VWD prevalence illustrate the need for better information concerning the relationship between VWF levels and bleeding. Many bleeding symptoms are exacerbated by defects in VWF, but the magnitude of the effect is not known. For example, approximately 12 percent of women who have menstrual periods have excessive menstrual bleeding. This fraction is much higher among women who have VWD, but it also appears to be increased for women who have VWF levels at the lower end of the normal range. Quantitative data on these issues would allow a more informed approach to the diagnosis and management of VWD and could have significant implications for medical practice and for public health.

Aside from needs for better information about VWD prevalence and the relationship of low VWF levels to bleeding symptoms or risk, there are needs for enhancing knowledge and improving clinical and laboratory diagnostic tools for VWD. Furthermore, there are needs for better knowledge of and treatment options for management of VWD and bleeding or bleeding risk. As documented in this VWD guidelines publication, a relative paucity of published studies is available to support some of the recommendations which, therefore, are mainly based on Expert Panel opinion.

Guidelines for VWD diagnosis and management, based on the evidence from published studies and/or the opinions of experts, have been published for practitioners in Canada, Italy, and the United Kingdom, but not in the United States. The VWD guidelines from the U.S. Expert Panel are based on review of published evidence as well as expert opinion. Users of these guidelines should be aware that individual professional judgment is not abrogated by recommendations in these guidelines.

These guidelines for diagnosis and management of VWD were developed for practicing primary care and specialist clinicians—including family physicians, internists, obstetrician-gynecologists, pediatricians, and nurse-practitioners—as well as hematologists and laboratory medicine specialists.

For a full guide published by NIH click here. This guide is well worth the time to read if you feel or have VWD!

EDS Awareness

  • Child's Life with EDS +

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  • Genetic not Abuse! +

    Like other rare or under-appreciated disorders like Ehlers-Danlos Syndrome many of the times is mistakes for Child Abuse. The staff Read More
  • Life with EDS +

    Many people go without being diagnosed with EDS and become labeled as a hypochondriac. Here is a simple poster with Read More
  • POTS & EDS +

    Many of those who have been diagnosed with Ehlers-Danlos Syndrome have the co-morbid condition Postural Orthostatic Tachycardia Syndrome (POTS). Gabby Read More
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CEDSA Quick Reference

Beyond the Stripes Newsletter

newsletter

CEDSA would like to keep you updated on new articles, events, research, possible therapy opportunities, or other information that impacts the Ehlers-Danlos Syndrome community. There is no cost or obligation to you other than completing the registration form. We will never sell your information to anyone. It is our promise to you not to bombard your inbox with emails that you do not want, as we can appreciate how hectic your life is and time is precious!

Sign-up today as the first newsletter will be coming out mid summer! Click here to do so!

CEDSA Guides

  • Bullying is a Denial of FAPE
  • IEP vs 504
  • IEP Process
  • IHP in Schools
  • Resolving Education Plan Issues

No Bullying

CEDSA strongly fights for students world-wide that have been bullied by their peers or school staff members. The United States Dept. of Education has strongly affirmed that when a student is bullied; it is a denial of Free Appropriate Public Education (FAPE). A student with a disability is more vulnerable to being bullied than their peers. At times, educators are also a bully to students in their choice of words. Stand-up with CEDSA and say NO to Bullying in Schools and share this guide with your school today! Click Here

 

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Many of the times, parents ask, " What is the difference between an IEP and Sec. 504?". It is a very good question and commonly a confusing choice for schools. The most binding and extensive plan is an IEP which offers the fastest method to enforcement. Section 504 plans cannot alter the access to the general education curriculum where an IEP can. Just because your student is an A student with a disability does not mean that they do not qualify for an IEP. No student can have both plans active at the same time. To learn more please click here to review the simple guide we have created for parents.

IEP banner

Many parents have been intimidated by the IEP process and it's complexity. Many of the times, it is not as hard as some schools want you to believe it is. Every child has a right to a Free Appropriate Public Education (FAPE), and you as a parent are their best advocate. We have created a guide that is very simple to follow on how to start the IEP process. To review this guide on obtaining an IEP please click here! CEDSA helps hundreds of families annually without charge to insure each child with EDS gets a proper education. If you need our help please feel free to contact us!

school health

A hot topic in the Ehlers-Danlos Syndrome community lately is the discussion revolving around truancy. One way to protect yourself from this allegation is to have an Individual Health Plan (IHP) in place for your child. In this plan, you will want wording to the effect that states the student will possibly have frequent absences do to their health issues and medical appointments. The IHP also helps the school staff develop an appreciation for your child's medical needs as it is shared with all who comes in contact with them. To review this guide feel free to click here and share it with others.

IEP

Non-compliance of an IEP or Section 504 plan is never easy on the parents, but worse, the impact it has on a student is horrible. The faster a compliance issue is addressed and resolved, the better it is for the student's ability to achieve a Free Appropriate Public Education (FAPE). Compliance issues can be highly emotional at times, which can lead to other unwanted problems, always try to remain calm and professional. CEDSA staff members are very versed in helping families obtain proper compliance with the student's best interest in mind always, if you need help feel free to contact us. We built a guide to help parents who choose to self advocate or who would like to know more about the compliance process. To view this guide please click here