By Nicole Guerin
Dallas, Texas VF Chapter

Like many of you I’m sure, I was devastated by my diagnosis of Vasculitis. What brought me great comfort was being able to speak to someone who knew exactly what I was going through. My family and friends were supportive, but they couldn’t empathize. I felt like I woke up in a different body each morning when I was on high doses of my life saving Cytoxan and Prednisone. Having someone’s ear that had been in my shoes was invaluable.

Now, I get the pleasure of being that “ear” to someone who is either in the same place I once was or maybe it is an individual or family who has relocated to the area and could use your advice about selecting a physician who has some back ground in treating our disease. Either way, it makes me feel wonderful to be helping out.

In addition, you can draw strength and support from each other and share tips on what has been helpful to you whether it is with your diet, medications or physicians.

I credit my team of doctors with saving my life and keeping me here today. If I can make one step in this journey just a little bit easier, than I am always happy to do so!

Luis Felipe Flores-Suarez, MDEl objetivo de la sesión es entablar contacto con los pacientes hispano-hablantes y sus familias. Se piensa con frecuencia que las Vasculitis afectan a pacientes de otras etnias o razas. Por ejemplo, la arteritis de Takayasu es más frecuente en asiáticos, y la granulomatosis de Wegener afecta principalmente a blancos. Sin embargo, ambas se ven más frecuentemente ahora en latinoamericanos, o como se les conoce en EUA, “hispanos”.

El ponente sera el Dr. Luis Felipe Flores-Suárez, quien es jefe de la Clínica de Vasculitis Sistémicas Primarias en el Instituto de Enfermedades Respiratorias de México, en la ciudad de México. Dará un panorama, como en el simposio general, de las vasculitis primarias en latinoamericanos o “hispanos”, hablará de la importancia de estas enfermedades, y la investigación que sobre ellas se hace tanto en términos de diagnóstico como de tratamiento, así como de proyectos que ahora se llevan en conjunto con equipos en EUA y Europa. Hablará de algunas diferencias entre distintas poblaciones étnicas y subrayará la importancia del diagnóstico diferencial con otras condiciones que pueden similar vasculitis, las que en ocasiones son más factibles de ver en “hispanos".

Cuando:   Sábado, Julio 31, de 2:45 a 5:00 P.M.

Donde:  The Westin Long Beach Hotel

333 East Ocean Boulevard

Long Beach, California

Quien debe atender:

Pacientes con Vasculitis y sus Familias; Doctores que quieren aprender mas sobre el Vasculitis.

The VF was recently awarded the BBB Wise Giving National Charity Seal. The BBB Wise Giving Alliance national charity carries a lot of meaning for both donors and charities. For donors, the appearance of the seal in a charity’s mailings, on its website, in newspaper and magazine advertisements or elsewhere is a clear and concise sign that the charity meets the Alliance’s Standards for Charity Accountability. Donors may not know, though, that for charities, putting the seal in their materials is the culmination of a demanding process.

Before national charities can even apply to use the seal, they must undergo evaluation by the BBB Wise Giving Alliance, the nation’s most experienced charity evaluator. And the evaluation process is anything but superficial. It involves rigorous scrutiny of a charity’s governance, effectiveness, finances and solicitations and informational materials. The standards go beyond what government regulators require.

Only organizations that come through an Alliance review with a “meets standards” conclusion are eligible to participate in the seal program. Not all will decide to do so. Participation is entirely voluntary and involves licensing agreement and fee. But more and more charities report that the seal gives them an efficient way of demonstrating their commitment to accountability and ethical practices, the values that donors are looking for. This commitment is all the more credible when it is verified by the familiar and respected BBB Wise Giving Alliance.

“National charities that display the BBB Wise Giving Alliance seal can do so with pride,” says Art Taylor, President and CEO of the Alliance. “Not only are they attesting to their organizations’ adherence to sound standards, they are helping to increase donor confidence and strengthen public trust in giving.”

Lisa Fittipaldi, having been diagnosed with Churg Strauss syndrome and Wegener’s granulomatosis, went blind in 1993 at the age of forty-seven. After months of doctors, tests, specialists and more tests, she descended into a freefall of anger and denial that lasted two years, until a child’s watercolor set, thrown down like a gauntlet by her frustrated husband, opened the door to a new life. In this moving memoir, she paints a vivid picture of the perpetual and emotional darkness that accompanied her diagnosis and vision loss, and her arduous journey to reclaim her life.

Congratulations to Linda Schultz, the winner of the 2009 Vasculitis Awareness Week Contest. After Linda’s daughter was diagnosed with Wegener’s granulomatosis, Linda became determined to raise Vasculitis awareness. Read how Linda raised both money and awareness with the Pet Photo Contest. By Cindy Webber

The VF Board of Directors is pleased to announce the selection of three research studies for funding through the VF Research Program. The program has funded almost $1,000,000 in research since its creation in 2001. The program is funded completely from donations and fundraising events organized by members, friends and family members. 100% of each donation designated for research goes to research. The VF does not charge an administrative fee to manage the Research Program.

How do white blood cells, immune system "soldiers," get to the site of infection or injury? They must crawl swiftly along the lining of the blood vessel, gripping it tightly to avoid being swept away in the blood flow, all the while searching for temporary "road signs" made of special adhesion molecules that let them know where to cross the blood vessel barrier so that they can reach the damaged tissue.

The eye, shaped much like a tennis ball, has three different layers of tissue surrounding a central gel-filled cavity. The middle layer of the eye is the uvea which contains many blood vessels, the veins and arteries that carry blood flow to the eye. Uveitis is inflammation of the uvea, and that inflammation can damage one's sight.

November 30, 2009 — A review article published in the November 15 issue of American Family Physician offers guidance on use in the family practice setting of saline nasal irrigation as an adjunctive therapy for upper respiratory tract conditions. "Upper respiratory conditions, such as acute and chronic rhinosinusitis, viral upper respiratory tract infection (URTI), and allergic rhinitis, are common disorders that negatively affect patients' quality of life," write David Rabago, MD, and Aleksandra Zgierska, MD, PhD, from the University of Wisconsin School of Medicine and Public Health in Madison. "Saline nasal irrigation is an adjunctive therapy for upper respiratory conditions, likely originating in the ayurvedic medical tradition. Its use, including indications, solutions, and administration devices, was first described in medical literature in the early 20th century."

Cindy Webber wasn't concerned when she noticed a recurring nasty purple bruise on her thigh. Her doctor told her to stop jogging. The Wheaton kindergarten teacher also wasn't worried when she began developing rashes all over her body. Allergies, her doctors thought. Webber started to panic, though, when she started feeling numbness and tingling in her limbs, recurring fevers, blurry vision, then waves of extreme pain - like someone was setting her on fire. "I was really frightened," she said. "I said, 'Am I going to die?' They said, 'We don't know what you have.”