CCFA - WebCast Update on Crohn's Treatments

On Wednesday, October 6 at 1 pm EST the Crohn's & Colitis Foundation of America will host an educational program on emerging advances in Crohn's disease treatments for patients, family members and caregivers living with Crohn's disease, a chronic and often debilitating digestive disease affecting over 700,000 Americans. This interactive webcast/ teleconference, Progress in CD: An Update On the Advances In Crohn's Disease, which is supported by an educational grant from Centocor Ortho Biotech Inc, is now open for registration at www.ccfa.org/webcasts/CrohnsUpdate.

The program will be led by Dr. Jonathan Braun, M.D., Ph.D., Professor of Pathology and Laboratory Medicine, and Molecular and Medical Pharmacology, at the David Geffen School of Medicine at UCLA. He will discuss the emerging advances and progress in treating and understanding Crohn's disease and answer audience questions during an interactive question-and-answer session.

"New discoveries and therapies for Crohn's disease are emerging and through the Crohn's disease update event on October 6, patients nationwide can tune in and hear more about recent discoveries and the latest treatments," explains Dr. Braun. "I highly encourage all Crohn's patients and their caregivers nationwide to take advantage of this opportunity and tune in to the event."

This educational event is available at no cost to participants. It will answer important questions about Crohn's disease, including:
• What are the current and emerging therapies for Crohn's disease?
• How is research targeting and utilizing genetics?
• What is new in pediatric research?

Source: http://www.ccfa.org/about/press/pressreleases/crohnsteleconference

Advocating For Your Medical Care

Many of us who have had to make 'generous' use of the medical system - in any country - have found that sometimes we have to be our own medical managers - keeping everything organized, following up with doctors who don't get back to you, asking about treatment options or insisting on tests. Like any field, the medical community has it's shinning stars, and it's... well... other guys. Here are some suggestions and strategies for advocating on your own behalf and being pro-active with your medical care.

• In a notebook, write down a list of questions for your doctor in advance of appointments. Bring this with you and actually refer to it during the appointment. Do not let yourself be rushed out before all your questions have been answered. I have found that once I get in there my mind goes almost blank- so this list is a life saver!

• As soon as you leave the appointment (maybe in the waiting room or your car), jot down notes about what the doctor told you. Here's where bringing a notebook is doubly useful. If you wait too long, complicated instructions and opinions can be forgotten.

• Research the tests or treatments that your doctor is recommending. Call your doctor or the lab where you are heading if you think of questions prior to a test or treatment appointment.
  

• Ask your doctor about treatment options that he has not mentioned or suggested. Ask him or her whether they are a good fit for you.
  

• Always ask about possible side effects and costs related to new treatments or tests you are being prescribed. A pharmacist is an excellent resource for all kinds of drug information.

• If your doctor or pharmacist is not familiar with something you mention, ask him or her to look into it and phone you back at a later date.
  

• Always ask for the results of your tests. Even if it's a "if we don't call you, everything is fine" type of situation.
  

• Seek out people who are suffering from the same condition and ask them if they would be willing to discuss their experiences with you. (Ps- ask me about Crohn's!)
  

• If you do not feel that your doctor is doing everything possible to help you or if you do not feel like you can trust your doctor, it is time for a second opinion or new doctor. Ask your primary doctor to refer you to a different specialist.
  

• Be prepared to travel to find the best doctors and medical facilities. It is cost effective to localize expensive equipment and facilities in large cities. Discuss with your employer the possibility of being able to move your work schedule a bit to accommodate appointments that often fall into the difficult M-F, 9-5 time of day. Ask if your doctor has office hours on the weekend.
  

• If there is something you do not understand, ask for clarification. Most doctors do not talk "over our heads" on purpose. These terms are commonplace to them, and they may need a reminder that you don't know what the "normal range" is for that number they just gave you.

Do you have more tips on this subject? Let me know!