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July 2007 - ICN Site News - Volume 7, Number 3
Read This Newsletter On The Web
In this issue:
1. My Mother Has Interstitial Cystitis: A Painful Bladder Story
2. IC In The News
4. Clinical Trial Announcements - UCLA, John Hopkins Pain Study
7. Consumer Awareness - Ambien
8. IC Support Opportunities
10. The ICN Shop
1. Hot off the Press! Our newest ICN Publication
 "My Mother has Interstitial Cystitis: A Painful Bladder Story" is a very special book written for the young children of IC patients (ages 6+). Why? Children don’t understand most illnesses and we, as parents, often hide our struggles from them. Yet, no matter how hard we try, most children sense that something isn’t right. They can see that their mother or father isn’t feeling well. They notice the frequent trips to the bathroom and whispered conversations behind closed doors. They become confused when their normal daily routine is changed for a doctors appointment or treatment. It’s normal for children to become frightened if a parent is emotional or crying. They may become angry when mom or dad can’t take them to the park or a ball game like they used to. Some children might worry, unnecessarily, that their parent is dying. Children need guidance, encouragement and support during this stressful time.
In this book, Jan, the ten year old daughter of an IC patient, explains what IC is and offers an easy lesson on bladder physiology. In “The Great Bathroom Hunt,” she shares some funny stories about her mom’s quest to find the best bathrooms in town. Jan explains that her mom has a different diet and can’t eat some of her favorite foods, like chocolate or pizza. She also talks about doctors and how they can help. Jan explains that her mom needs some help and shares her daily list of chores. She also includes her top ten list of fun activities that she can do at home when her mom isn’t feeling well. At the end of the book, you’ll find “The Great Word Hunt” and a resource list of web sites for more fun activities that can be printed out for quiet time at home.
I hope that Jan’s story will inspire many happy and productive conversations with your
children! I encourage you to talk about IC with each child individually. Give them the opportunity to ask questions and provide firm guidelines on what they can and can’t do if mom or dad isn’t feeling well. Teach them to ask for help from you and a medical professional (i.e. school nurse) if they aren’t feeling well. Remind them that illness does not change your love for each other. Yes, there will be moments of frustration and stress, but with great communication and a healthy dose of laughter, your family will not only survive but thrive after your diagnosis of IC.
8.5 by 11 - 32 pages
ISBN - 978-0-9797840-0-2
Publisher: J.H. Osborne, Inc.
Distributor: Interstitial Cystitis Network
Cost: $12.50 in print or $10 by email. Proceeds support the ICN's free patient support services.
| Sample Pages - Please Click To See Enlargement |
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Sample pages:
Page 17 - My Mom Sees A Urologist
Page 19 - Even Mom's Need Help
Page 22 - Introducing quiet time activities
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2. In The News
We're in the midst of the slow, steamy summer months and
Newsweek Releases New Article on Pain
" The Changing Science of Pain" is a thoughtfully written discussion of chronic pain, the challenges that patients face in receiving care and how soldiets returning from Iraq receive cutting edge new pain treatments designed to prevent chronic pain from occurring. Read it now!
Alaven Acquires Exclusive Rights to Sell Cystoprotek in the USA
Alaven Pharmaceuticals (Georgia) is an important new name in the IC community. In April, they signed an agreement with Algonot LLC to market Cystoprotek in the USA. Developed by Dr. Theoharis Theoharides, Cystoprotek is an OTC supplement that has gained popularity for its multiple methods of action. It is believed to have a bladder coating effect as well as an anti-inflammatory effect. In a retrospective open label study of Cystoprotek released last fall at the federal IC conference, 269 women with IC who had failed other forms of therapy took Cystoprotek for roughly one year. They experienced a 51% inhibition in their IC symptoms.
What makes this development exciting is the fresh, new perspective Alaven brings to our movement as they develop their first comprehensive educational campaigns for the USA. As many of you know, pharmaceutical companies have played a vital role in getting the word out to clinics that IC is treatable. We are excited to welcome Alaven Pharmaceuticals to the IC cause. The more hands involved the better!
Cystoprotek, Algonot and the entire lineup of products are still available in the ICN Mail Order Center
IC Ranks In Top Ten Of Most Costly Urologic Diseases
Bladder, prostate and other urinary tract diseases cost Americans nearly $11 billion a year, according to a new report from the National Institutes of Health. Medicare’s share exceeded $5.4 billion. The five most expensive urologic problems — accounting for $9.1 billion — are, in descending order, urinary tract infections, kidney stones, prostate and bladder cancers and benign prostate enlargement, according to the authors of Urologic Diseases in America. The report was published online this spring and will be available in print and on CD in early May. Read more!
5. Consumer Alerts
FDA Advises Consumers to Avoid Toothpaste From China Containing Harmful Chemical
The U.S. Food and Drug Administration (FDA) warned consumers to avoid using tubes of toothpaste labeled as made in China, and issued an import alert to prevent toothpaste containing the poisonous chemical diethylene glycol (DEG) from entering the United States. DEG is used in antifreeze and as a solvent. Consumers should examine toothpaste products for labeling that says the product is made in China. Out of an abundance of caution, FDA suggests that consumers throw away toothpaste with that labeling. FDA is concerned that these products may contain "diethylene glycol," also known as "diglycol" or "diglycol stearate."
FDA is not aware of any U.S. reports of poisonings from toothpaste containing DEG. However, the agency is concerned about potential risks from chronic exposure to DEG and exposure to DEG in certain populations, such as children and individuals with kidney or liver disease. DEG in toothpaste has a low but meaningful risk of toxicity and injury to these populations. Toothpaste is not intended to be swallowed, but FDA is concerned about unintentional swallowing or ingestion of toothpaste containing DEG.
FDA has identified the following brands of toothpaste from China that contain DEG and are included in the import alert: Cooldent Fluoride; Cooldent Spearmint; Cooldent ICE; Dr. Cool, Everfresh Toothpaste; Superdent Toothpaste; Clean Rite Toothpaste; Oralmax Extreme; Oral Bright Fresh Spearmint Flavor; Bright Max Peppermint Flavor; and ShiR Fresh Mint Fluoride Paste. Read more!
Vaginal Valium Suppositories Made With Glycerin
This is a perfect example of why buying from a foreign pharmacy online can be so dangerous. The FDA warned pharmaceutical manufacturers, suppliers, drug repackers, and healthcare professionals who compound medications using glycerin of the importance of assuring that the glycerin used is not contaminated with diethylene glycol (DEG), a known poison used in antifreeze and as a solvent. Glycerin is a sweetener commonly used worldwide in liquid over-the-counter and prescription drug products. Although, at the present time, FDA has no reason to believe that the U. S. supply of glycerin is contaminated with DEG, it is aware of reports from other countries over the past several years in which DEG contaminated glycerin has caused human deaths. FDA emphases the importance of testing glycerin for DEG due to the serious nature of this potentially fatal problem. Read more!
Are you taking Zanaflex?? A muscle relaxant?? FDA Alert
The FDA announced today that Zanaflex, a common muscle relaxant, should not be taken with either Ciprofloxacin or Fluvoxamine, due to a significant increase in sedation or drop in blood pressure. If you are taking Zanaflex, please talk with your doctor about this new alert! Read more!
6. Clinical Trial & Research Announcements
NIDDK Launches Phase III CellCept Study
The purpose of this study is to investigate the safety and effectiveness of a medication called CellCept in treating refractory (has not responded to other treatments) interstitial cystitis. Inotherwords, this is a study for patients who have more severe IC that have not responded to any therapies. In addition, they must have been diagnosed with a hydrodistention/cystoscopy. CellCept is an immuno-suppressant. Immuno-suppressants work in the body by reducing the immune system’s ability to produce certain reactions that can cause inflammation. In some people, the inflammation produced by their immune system can damage healthy tissues and cause symptoms of pain and discomfort. CellCept is approved by the U.S. Food and Drug Administration (FDA) for use in patients who have had an organ transplant and helps to prevent the rejection of the transplanted organ. The study will be conducted at eleven research centers throughout the USA & Canada. Read more!
NIDDK Launches Physical Therapy Trial for Pelvic Pain
This new study will assess the effectiveness of physical therapy for the treatment of pelvic pain. Eligible participants will be randomly assigned to receive either myofascial tissue manipulation or global therapeutic massage. Those receiving myofascial tissue manipulation will have targeted internal and external connective tissue manipulation focusing on the muscles and connective tissues of the pelvic floor, hip girdle, and abdomen. Those receiving global therapeutic massage will have non-specific somatic treatment with full-body Western massage. Read more!
7. Support Opportunities
On-Line Support Chats
The IC Network also offers live support group meetings in our chat room for patients who are too ill to attend local meetings. These chats are run by our dynamic team of support group leaders, Leslie, Kath & Linda!
WINTER 2007 CHAT SUPPORT GROUP MEETING SCHEDULE
1st & 3rd Monday of the Month, 5PM PST to 7PM PST
Local & Community Support Groups
Search groups by state
Attention support group leaders!
(1) Please review your listing on our website and make sure that it is accurate. All support groups are welcome to be listed. Please let us know if we have missed any groups.
(2)
Are you struggling to raise money for your group to handle mailings and phone bills?? You can distribute the best IC books and other items from the ICN Shop as an affiliate! We'll handle all the shipping and send you a donation for 5% of each sale! Learn more about affiliates here!
10. The ICN Shop!
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