August 2004 ISN News

Safe Surfing with Scleroderma Sites to Surf!

The ISN's Scleroderma Webmaster's Association is a collaboration of respected webmasters worldwide who are committed to providing responsible scleroderma information and support in our online community. The SWA endorses and promotes dozens of websites, in many languages, with it's immensely popular and free Scleroderma Sites to Surf! program. The SWA screens sites for content and trustworthiness, describes websites and webmaster qualifications, and links them together with it's well-known Surfing Penguin logo. Posted 09-04-04.

Open Position: ISN Senior Support Specialist for Sclero Forums

Volunteer applications are now being accepted for Senior Support Specialist to serve on the International Scleroderma Network's Sclero Forums team of Support Specialists. This position handles message board issues; coordinates scheduling of virtual message board moderators, moderates on the message board on a regular basis to keep informed of issues and training needs, and assists in the training of new ISN Support Specialists. If you are interested in this wonderful volunteer opportunity, please email [email protected] Posted 09-04-04.

Heidi Nolan: Promoted to Manager of Sclero Forums

Heidi Nolan: ISN Manager of Sclero Forums. The ISN is pleased to announce that Heidi Nolan has been promoted from Senior Support Specialist to Manager of ISN's Sclero Forums, which provides 24-hour a day online support for scleroderma and related illnesses, throughout the world. Posted 09-02-04.

Voices of Scleroderma Volume 1: Featured Story #99 of 100

The following story is featured in the ISN's Voices of Scleroderma Volume 1 book. The book has articles by world experts in scleroderma and caregiving, including Dr. Joseph Korn, as well as true personal stories from those affected by scleroderma and related illnesses.

Mick Breske: UCTD/Lupus I felt I was being treated as some dumb blond. Finally one day I was referred to a rheumatologist…

Voices of Scleroderma Volume 1: Featured Story #98 of 100

Krista: Scleroderma, Polymyositis, Vasculitis Many of you probably know that I have translated "SCLERO.ORG" into my language, Romanian…

Welcome Michele Allison: ISN New or Renewing Member

The International Scleroderma Network welcomes Michele Allison as a new or renewing member! Posted 08-26-04. (Also see ISN Membership)

Thank you to Gifts-in-Kind Donor, Judith Thompson Devlin

The International Scleroderma Network extends our thanks to Gifts-in-Kind Donor, Judith Thompson Devlin. Posted 08-26-04. (Also see ISN: Gifts in Kind)

Thank You to Donor, Lizzy Cotton

The International Scleroderma Network extends our thanks to Lizzy Cotton for her donation. Posted 08-26-04. (Also see ISN Donations)

Thank you to Donor, Alpha Epsilon Chapter of Alpha Delta Kapa

The International Scleroderma Network extends our thanks to the Alpha Epsilon Chapter of Alpha Delta Kapa of Corpus Christi, Texas for their donation. Posted 08-26-04. (Also see ISN Donations)

Voices of Scleroderma Volume 1: Featured Story #97 of 100

Kellie: Overlap Scleroderma and Mixed Connective Tissue Disease (MCTD) I am so relieved to read about so many people who have had the same experiences…

New Page: Brain Involvement in Scleroderma

Brain Involvement in Scleroderma In a small study of 30 Russian patients presented at EULAR 2004, the systemic forms of scleroderma were associated with brain (cerebral) problems, such as chronic insufficiency of brain circulation. Localized scleroderma, particularly linear scleroderma, has recently been associated with both brain lesions, atrophy, epilepsy, migraines, and trigeminal neuralgia. New page 08-23-04.

Voices of Scleroderma Volume 1: Featured Story #96 of 100 /td>

Cindy: Undifferentiated Connective Tissue Disease (UCTD) He seems to think that I have Systemic Lupus Erythematosus, but until my symptoms show more criteria for it, he can't call it that…

Bogotá, Columbiana: 4 de Septiembre

(Español/Spanish) Asociación Colombiana de Esclerodermia Hemos programado una reunión para el dia 4 de Septiembre próximo. La celebraremos en el Auditorio de la Cámara de Comercio de Bogotá y la anunciaremos por emisoras de radio locales. El propósito es conocer personas con Esclerodermia y a sus familiares para que se vinculen a nuestra ASOCIACIÓN y poder así, entre todos, llevar a cabo nuestros objetivos. Posted 08-23-04.

New Page: Susanne Piché: ISN Desktop Publisher

Susanne Piché: ISN Desktop Publisher Susanne is self-employed in Boston, Massachusetts. Both scleroderma and pulmonary fibrosis have struck in her family. New page 08-20-04.

New Page: Francisco Castellanos, ISN Support Group Leader

(English) Francisco Castellano: ISN Support Group Leader for Bogota, Columbia, the Asociación Colombiana de Esclerodermia. New page 08-20-04.

New Page: Francisco Castellanos, ISN Líder Del Grupo De Ayuda

(Español/Spanish) Francisco Castellano soy ISN Líder Del Grupo De Ayuda en Bogota, Columbia, la Asociación Colombiana de Esclerodermia. New page 08-20-04.

Voices of Scleroderma Volume 1: Featured Story #95 of 100

The following story is featured in the ISN's Voices of Scleroderma Volume 1 book. The book has articles by world experts in scleroderma and caregiving, including Dr. Joseph Korn, as well as true personal stories from those affected by scleroderma and related illnesses.

Mo: Mother of Undiagnosed Girl We have an 8-year-old daughter whose symptoms have stumped our pediatrician…

Voices of Scleroderma Volume 1: Featured Story #94 of 100

Veronica: Sjögren's Syndrome (Italy) I am a 30-year-old woman and I have been suffering for three years from Sjögren's Syndrome with highly positive anti-SSA antibodies…

(Italiano)Veronica: La Sindrome di Sjögren Sono una ragazza di 30 anni da tre anni sono affetta da la Sindrome di Sjögren con alta positività per anticorpi anti-SSA…

Voices of Scleroderma Volume 1: Featured Story #93 of 100

(English) Franco: Sjögren's Syndrome (Italy) My name is Franco, I am 57 years old, and three years ago I was diagnosed with Sjögren's Syndrome…

(Italiano) Franco: Sindrome di Sjögren Sono Franco ho 57 anni,da tre anni mi hanno diagnosticato la Sindrome di Sjögren, ma in realta' sono quasi trenta anni che ne soffro.

Voices of Scleroderma Volume 1: Featured Story #92 of 100

Sue Ann: Mother of Son with Scleredema Scleredema is an illness similar to scleroderma. It is also known as Scleredema Adultorum, Scleredema Adultorum of Buschke, Scleredema Diabeticorum, and Scleredema Diabeticorum of Buschke…

Voices of Scleroderma Volume 1: Featured Story #91 of 100

Bob: Pulmonary Fibrosis I have learned that you can fight Pulmonary Fibrosis and you do not have to give up all the activities you once enjoyed…

(Español/Spanish) Folleto Nuevo: ¿Que es Escleroderma?

(Español/Spanish) Folleto: ¿Que es Escleroderma? PDF, gratuito. (Inglés: New free PDF brochure, What is Scleroderma?, Spanish version.) International Scleroderma Network.

New Page: Asociación Colombiana de Esclerodermia

(Español/Spanish) Asociación Colombiana de Esclerodermia Nuestra primera reunión será: 05/08/04, 03:30 PM, Carrera 7 22-47 Sur, Bogota, D.C., Colombia. Francisco Castellanos. New page 08-05-04 ISN.

Voices of Scleroderma Volume 1: Featured Story #90 of 100

Tina G: Systemic Scleroderma and Interstitial Cystitis Interstitial Cystitis is a bladder disease. The symptoms are frequent urination, pain and pressure…

New Page: Asociación Colombiana de Esclerodermia

(Español/Spanish) Asociación Colombiana de Esclerodermia Nuestra primera reunión será: 05/08/04, 03:30 PM, Carrera 7 NÂs 22 - 47 Sur, Bogota, D.C., Colombia. Francisco Castellanos. New page 8-5-04 ISN.

New SWA Member: Asociación Colombiana de Esclerodermia

(Español/Spanish) Asociación Colombiana de Esclerodermia. Bienvenidos a la pagina de la Asociación Colombiana de Esclerodermia "Ascler" somos una entidad sin animo de lucro creada con el proposito de apoyar integralmente a las personas que padecen de esclerodermia y a sus familiares. New SWA member 8-5-04.

In Loving Memory of Dr. Shahnaz Christine "Chris" Saad

The International Scleroderma Network thanks Gene and Shelley Ensz for their donation in loving memory of Dr. Shahnaz Christine "Chris" Saad, owner of Chris' Corner Books for Kids and Teens in Philadelphia, who passed away this weekend from complications of scleroderma. Posted 08-03-04. (Also see ISN: In Loving Memory)

Voices of Scleroderma Volume 1: Featured Story #88 of 100

Yvonne Frasure: CREST and Fibromyalgia I no longer go to the doctor because I simply cannot afford it. I cannot get insurance so everything is out of pocket…

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