The Fall 2016 IC Optimist is now available for your viewing pleasure. Print subscribers should receive their printed copies next week. E-mail subscribers within the next 48 hours!!
In this issue:
(1) Editorial: Hunner’s Lesions Should Be Considered A Separate Disease
Our editorial suggests that Hunner’s lesions should be considered a separate and unique disease, a viewpoint shared by many of the international IC research community. Why? Because patients present with a very distinct profile: reduced bladder capacity and biopsy results showing profound inflammation NOT found in the 90% of patients who don’t have lesions. These patients deserve their own dedicated research efforts.
(2) New Chronic Pelvic Pain Guide Adds Clarity for IC
From receiving a correct diagnosis to finding compassionate treatment, chronic pelvic pain can be a difficult journey for patients to navigate. Is it the bladder? The prostate? The muscles or nerves? Thankfully, the International Continence Society has released new guidelines which outline the nine distinct domains that could play a role in your pelvic pain. For the IC patient who hasn’t responded well to treatment, this guide could shed light on other contributing factors. It’s a remarkable and much needed shift of perspective.
(3) Feature Story – Chronic Pain Patients Struggle To Find Care
When the US Centers for Disease Control issued new guidelines on the use of opiate medications, legitimate chronic pain patients found it much more difficult to obtain medication that they had been using safely and correctly for years. In our second feature story, Stacey Shannon shares the stories of several IC patients who have been caught up in the tide of opiate restrictions and medical care providers who are now reluctant to provide pain medication.
(4) Self-Help Tip: The Agony of Cranberry
There are some things that we can certainly do to reduce pain, particularly avoiding those foods that irritate the bladder wall (especially if you have Hunner’s lesions) and/or the nerves. In “The Agony of Cranberry,” we share the reasons why you should avoid all things cranberry.
(5) Research Update: Substantial Revision & Removal Rate For Interstim
If you were going to have surgery, wouldn’t you want to know the potential complication rate first? Three research studies conclude that patients undergoing Interstim® surgery have a significant rate of unexpected revision surgery and/or device removal. We share questions that you should ask your doctor if you are considering neuromodulation.
(6) Recurring Bladder Infections Linked To Menopause
Menopausal women are more prone to UTI because of thinning of the protective mucus in the bladder and vagina. If you fall into this group, you are certainly not alone and we have some tips that might help!
(7) The Latest Clinical Trials
We review two studies currently seeking patients. Please note that LiNKA study for Hunner’s lesion is ending soon.
(8) Industry News & Consumer Alerts
The price of Hep-Lido-A dropped dramatically in Fall 2016.
(9) The First IC Angel – Diane Manhatten Lopresti
We share the story of one of the first remarkable patients with IC – Diane Manhatten Lopresti. Her tragic passing in 2003 began the IC Angel movement. We share her story to inspire other patients to be an IC angel and help those who are struggling and/or in crisis.
(10) November is Bladder Health Awareness Month
The American Urology Association and several urology non-profits have launched a new awareness campaign that will spotlight various bladder diseases each week of the month. This is another great opportunity for IC awareness and exposure.
(12) IC Diet Project: White Chocolate Dreams
Chocoholics are well known to sneak a treat even at the risk of causing an IC flare. Yet, white chocolate contains none of the irritants, rarely irritates the bladder and makes for a rich and creamy treat. We share recipes for steamy white hot chocolate, cookies and some wonderful desserts for the holidays!
(13) Surviving The Holidays As A Newly Diagnosed Patient
Last but certainly not least, if you’re newly diagnosed with IC and facing your first holiday season, we share our best holiday coping tips! You can enjoy the holiday season with some great suggestions from patients just like you! Always remember, you are not alone!
(14) What’s New in the ICN Shop – One of the best books written for IC patients in a decade: The Interstitial Cystitis Solution, Tyler’s No Acid Coffee & more
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