Inflammatory Skin Disease Patient Information
Useful information for the person who suffers with an inflammatory skin disease.
ISDI is now offering monthly support group meetings for people with eczema. For more information please contact us at 757-223-0795 or email: [email protected]
PLEASE HELP! Make Inflammatory Skin Disease Awareness Month a Reality
The Inflammatory Skin Disease Institute (ISDI) needs your help. Please call your Congressperson and ask them to co-sponsor House Resolution 656 submitted by Congressman Rob Wittman.
HR656 declares December as Inflammatory Skin Disease Awareness Month. We need 25 co-sponsors to make it happen. Simply call or email your representative and state that you are a constituent and ask them to co-sponsor House Resolution 656.
Once you make contact, let us know and ISDI will follow up with a letter to your representative.
Thank you for taking the time to support Inflammatory Skin Disease Awareness Month
VIRGINIA CLINICAL RESEARCH IS CURRENTLY ENROLLING FOR STUDIES IN HAND ECZEMA, PSORIASIS , AND ACNE. FOR MORE INFO PLEASE CONTACT DANIELLE BENEDICT AT --- 757-625-0151
ANNOUNCING the School House Project
The ISDI is proud to announce the "The School House Project: Eczema in school" - a booklet which was developed to help teachers and school nurses help their students who suffer with eczema in school. For more information please contact ISDI at 757-223-0795 or email [email protected].
You and Your Doctor
Inflammatory skin diseases affect men, women and children of all races. Inflammatory skin disease is a broad category ranging in severity and can be devastating to the patient causing great discomfort and emotional stress. Selecting a doctor that you feel you can communicate with is so important. In some instances you might need to be referred by your PCP to a dermatologist or other specialist. Remember, you are a team working towards the right treatment for you.
Finding the right doctor might take time, but it is important to develop a trusting relationship. Learn as much as possible about your skin disease and ask plenty of questions!
Things to Think About when Choosing a Treatment Option:
Do your research. Be aware of the pros and cons of specific treatments. What works for someone else might not be the option for you. How do they affect your quality of life? Ask about the importance of staying with a treatment. It's ok to ask questions. If you do not ask then the doctor assumes you understand everything. Nurses are also available to help with questions.
Be Your Own Advocate:
Seek the information you need, ask questions of your doctor and your insurance provider. If you don't understand what is being said to you, let them know - ask them to speak in layman's terms.
Dealing with your skin disease will most likely be a life-time commitment, so having a doctor(s) that you can trust and
communicate with will certainly aid in controlling your skin disease.
The Coalition of Skin Diseases: There Is Power In Numbers:
The Coalition of Skin Diseases (CSD) is a voluntary coalition of patient advocacy groups addressing the needs and concerns of millions of people whose lives are affected by skin diseases. For more information contact the Inflammatory Skin Disease Institute at 757-223-0795..
College Scholarship Information
Every year ISDI awards a college scholarship to a deserving student who suffer with inflammatory skin disease. If you are interested in applying, please download the application and mail to ISDI or contact ISDI for an application or for more information.
Please include a picture and permission to print picture and essay if chosen as a recipient.
Click HERE to download our Scholarship Application form.
The Inflammatory Skin Disease Institute is proud to announce the recipient of our 2010 Scholarship Program: Jessica Foster from St. Joseph, Missouri. To read her essays CLICK HERE
Reach out to others and share challenges and triumphs in dealing with your disease. Patients often look to others in similar situations to discuss treatments, feelings, etc. If you are looking for support from someone who has the same disease as you, contact us and we will add you to our penpal list. Send your name, address, phone, and/or e-mail to ISDI, P.O. Box 1074, Newport News, VA 23601 or email us your request.
If you are a person with a skin disease, or the parent of a child with a skin disease, you have undoubtedly been faced with those rude, crude and even well meaning people asking "those questions."
Do you have any snappy comebacks that you want so much to say, or actually have said? Send us your responses and you might see yours in print.
Editor's Note: The purpose of this section is three-fold:
1) it is an opportunity to educate and make the public aware of the disorder,
2) it lets society know it is not appropriate to stare and ask hurtful questions, and
3) it is an opportunity to let off steam with a touch of humor, allowing us to laugh.
A Prospective Pediatric Longitudinal Evaluation Study (APPLES)
Astellas Pharma US, Inc. invites physicians and their patients to participate in APPLES, a long-term observational study designed to evaluate the safety of Protopic (Tacrolimus) Ointment in children with atopic dermatitis. As part of our commitment to expand knowledge about Protopic safety, APPLES is collecting health information for 10 years on children who have previously been treated with Protopic. The APPLES trial is an observational study and does not provide or require current administration of Protopic or any other therapy.
Patients who first used Protopic for at least 6 weeks before 16 years of age are encouraged to participate in APPLES if they have been diagnosed with atopic dermatitis and were treated with Protopic. Because Protopic has been available in the United States since 2001, both young adults and children may be eligible to participate. Once enrolled, patients (or their caregivers) will be interviewed every 6 months about their health by the Astellas APPLES Study Call Center. Patients (or caregivers) will also be reminded to return to their physician for a study-related free annual physical and free biennial dermatologic exam. Gift cards of a nominal value will be sent to patients (or caregivers) after each interview is completed.
All data collected will remain confidential in accordance with applicable privacy guidelines and regulations.
Over 4,000 patients have been enrolled in APPLES since its start in 2005, but many more are needed to meet our enrollment goal. If you are interested in participating in APPLES, or would like more information about the study, please contact the Astellas APPLES Study Center Line at (877) 277-7530.
For current Protopic prescribing information, please click here: Protopic (Tacrolimus) ointment
APPLES is a registered trademark of Astellas.
Pediatric Eczema Elective Registry (PEER)
Parents and referring physicians can contribute to a "landmark" scientific, observational, survey-based study that will follow approximately 5000 children with eczema during their growing years. Children between the ages of 2 years -17 years who have used Elidel cream to treat eczema during the 6 months prior to enrollment may participate in this "real world" observational registry. No physical exams or labs are required. There are no medication requirements or medication restrictions during the entire observation period. The child's eczema may be active or in remission at the time of enrollment. Parents will receive free eczema educational materials and eczema skin care tips during the entire observation period. The parent completes a brief survey at Enrollment and then twice yearly for a 10-year observation period. Surveys can be completed from home by mail, e:mail, phone or fax. More than one child per family may participate. The parent receives $25 for each completed questionnaire (total $500.) during the observation period.
Enrollment is through the community-based physician who provides the Enrollment form and confirms patient eligibility on the form. Referring physicians receive $50.00 for each participant enrolled. There is no limit to the number of patients enrolled per physician.
For Enrollment forms and/or further information contact (toll-free) 1-877-711-7337 (PEER) or their website.
Children's Skin Disease Foundation
The Children's Skin Disease Foundation (CSDF) was founded by Francesca Tenconi, a California teenager on her 16th birthday. At age 11 Francesca was diagnosed with pemphigus foliaceous, a serious, potentially fatal skin disease. Francesca felt an organization was necessary to focus on the unique problems of children and teenagers who suffer from skin disease and to raise funds to help these children. To support this happening, Francesca told her family and friends to give no gifts for her 16th birthday - just make contributions to start a foundation. Four days after her birthday in 2000, Children's Skin Disease Foundation was formed. Children's Skin Disease Foundation (CSDF) is a 501(c)3 non-profit corporation which focuses on the unique problems of young people who suffer from skin disease and the families who care for them. For more information visit their website at https://www.csdf.org/ or contact CSDF at 925-947-3825.