Support • Outreach • Advocacy • Resources
An HNC Program for Girls and Women with Bleeding Disorders
SOAR's Mission Statement: To improve the quality of life for girls and women with bleeding disorders, so that they may SOAR to their full potential.
SOAR stands for support, outreach, advocacy and resources, and is a group of women helping women, with the objectives of:
- Increasing knowledge and awareness about the symptoms, diagnosis and treatment of bleeding disorders among the general public and health care providers;
- Equipping girls and women who may suspect they have a bleeding disorder with the knowledge necessary to discuss their symptoms with their health care provider, thereby decreasing the time until a proper diagnosis is made;
- Empowering girls and women diagnosed with a bleeding disorder to obtain the best medical care and support resources possible;
- Enhancing health-related quality of life for girls and women with bleeding disorders through the development of – and access to – support services and programs.
- Contributing, through advocacy and participation, to ongoing research about girls and women with bleeding disorders.
According to CDC estimates nearly 44,000 girls and women in North Carolina may have a bleeding disorder. Unfortunately, too many remain undiagnosed putting them at risk for unnecessary suffering and even life-threatening events. Those already diagnosed often lack necessary information about treatment and need support.
SOAR programs are open to all females with bleeding disorders, including those diagnosed with von Willebrand disease, hemophilia A and B, rare factor deficiencies (such as factors V, VII, X, and XIII), platelet disorders, and carriers of any of these disorders (both symptomatic and non-symptomatic). Most SOAR events are for women and girls only. Some events may be for women and older girls only. If you are not sure whether SOAR is for you, please contact us.
"This group of women has already had a tremendous effect on my life... Finally, I felt that I was with a group of people who really understood my situation, and that empowered me to not only advocate for myself, but reach out to all women who may be suffering in silence."
– Heidi T., SOAR member
Through SOAR, HNC provides information packets for girls and women who may be seeking a diagnosis, and for those who are newly diagnosed. SOAR members also provide presentations on a regular basis throughout the state. Please let us know if you would like a presentation given in your community, school, place of employment or other venue. After all, your knowledge can help others get a proper diagnosis and treatment – and may even save a life.
To find out more about SOAR or share suggestions for future presentations, please submit an online request for information or contact us at <soar@hemophilia-nc.org>.
In addition to the resources of HNC-SOAR there is also:
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Women with undiagnosed bleeding disorders risk:
- Unnecessary medical procedures including hysterectomies;
- Post-surgical heavy bleeding;
- Dental procedure heavy bleeding;
- Difficult pregnancies and deliveries including bleeding;
- Unnecessary "accidents" leading to embarrassment;
- Missing school or work due to heavy menstrual bleeding;
- Self-esteem and relationship issues.
Common symptoms of a bleeding disorder:
- Easy bruising;
- Nosebleeds;
- Gum bleeding;
- Bleeding from trivial wounds;
- Dental procedure-related bleeding;
- Post-tonsillectomy bleeding;
- Post-partum bleeding;
- Heavy periods:
- Needing to change your tampon or pad within an hour because it is saturated or leaks;
- Passing clots larger than one inch in diameter;
- Using more than one tampon or pad at a time;
- Being absent from school or work because of heavy bleeding during your period;
What to do if you suspect you or someone you know has a bleeding disorder:
- Make an appointment with your doctor;
- Talk to family members about their experiences;
- Contact Hemophilia of North Carolina for information about services and support available;
- Check other resources on this site.
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