Inflammatory Skin Disease Patient Information

Useful information for the person who suffers with an inflammatory skin disease.

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.

College Scholarship Information

Every year ISDI awards college scholarships to two deserving students 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 in our newsletter if chosen as a recipient.

Click HERE to download our Scholarship Application form.

Penpal Connections

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.

Tasteless Comments

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.

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 www.ThePeerProgram.org.

Children’s Skin Disease Foundation

The Children’s Skin Disease Foundation is now accepting applications for Camp Wonder 2006, an incredible camping experience being offered to children with skin disease, ages 6-16, at no cost to the child or family. The week offers the opportunity to participate in exciting activities, form lasting friendships and ultimately develop a stronger sense of self-esteem while under the careful and loving supervision of an excellent medical staff and counselors. The two sessions will be Camp Wonder, Livermore, California, June 25th to July 1st and Camp Wonder at Victory Junction Gang Camp, Randleman, North Carolina, July 9th to July 14th.

For more information, please contact Christine Tenconi, 925.351.7225 or email: ctenconi@hotmail.com. For all children that qualify, applications will be accepted on a first come first serve basis.