The IC Underground

We APPLAUD those mothers of interstitial cystitis patients who have provided us unconditional love and support. They’ve listened to our fears, comforted our tears and been a constant source of encouragement and love.  You have given us the strength and courage to face and often overcome our IC struggles.

We SALUTE those IC patients who, despite their own illness, remain steadfast MOTHERS to their children and extended family. Each day, you work to make your house a happy home. You provide comfort and a safe place for family members to land. You are amazing women!

We want to ENCOURAGE IC patients who are hoping to become MOTHERS. Don’t let IC stop you. IC cannot change your heart, your soul and your ability to love a child. You can be an awesome parent, though it will certainly require careful planning and decision making. We’ll be launching a new ICN Pregnancy Resource Center on our website in the very near future that we hope will guide you through these precious moments.

But, most of all, we celebrate each and every IC patient who continues to work hard, each day, to live your life as fully as you can. Whether you have a fancy career or stay at home, your life is important and meaningful. You have family who love you and friends who care for you dearly.

Happy Mother’s Day!!

Jill Osborne & the entire Interstitial Cystitis Network Family

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For more resources that can help you in your journey of motherhood and parenthood, such as our children’s book “My Mom Has IC: A Painful Bladder Story,” please visit the ICN Shop at: http://www.icnsales.com! Our goal is to support you!!

We can’t say it enough, there are thousands of non-profit organizations desperately looking for funds. Some are legitimate, others are less so. Some send their pitches by regular mail, others by email. Some dedicate the majority of their funds for direct services (i.e. by funding research), others are top heavy and use much of that money to pay staff.

The Better Business Bureau has an excellent guide that will help you determine if the charity you would like to support is functioning in a prudent and healthy way. They ask you to evaluate how a non profit governs their organization, how they spend their money, their truthfulness and their willingness to disclose basic information to the public.

How an organization is managed is vital. We want to know if the Board of Directors is fulfilling its role and responsibiilities. Are they evaluating the performance of the organization? Are they reviewing the budget?? Are they providing performance reviews of the Executive Director?

We want to know if that board is meeting regularly (i.e. a minimum of three times a year). In some states (i.e. California), Board meetings are also required to be open to the public and organization members or donors. One simple way to check? Do they provide a calendar of board meetings on their websites.

Most of all, we want to ensure that the Board does not have a financial bias or interest in the organization. Normally and in most organizations, board members are generally volunteers. The BBB suggests that “Not more than one or 10% (whichever is greater) directly or indirectly compensated person(s) serving as voting member(s) of the board. Compensated members shall not serve as the board’s chair or treasurer.”

In addition to the governance of the group, we also want to know if they are spending our donations wisely. The BBB suggests that 65% of the budget should be directed towards program activities. Some organizations are very top heavy with 50% or more of their budget going to salaries and administrative overhead rather than programs. This is something to be aware of and to evaluate if you want to make long term donations to any group.

Last, but certainly not least, we want to make sure that this organization is functioning as transparently as possible. Conducting business behind closed doors, in my opinion, creates doubt for a publicly funded non-profit organization. We expect financial statements/annual reports to be available directly on their websites as well as their IRS form 990’s. The IRS Form 990 is the best document that you can use to evaluate an organization because it breaks down the budget indepth, provides salary figures, board members who are compensated, how much they receive etc. etc. Always remember that tax law requires that the 990 be made available to you at your request. If it is not provided, you can file a complaint with the IRS and we strongly suggest that you do so.

So, this year, as you receive yet more letters, emails, etc. asking for donations, we hope that you’ll take a moment to evaluate that organization and ask yourself if they are using your donations wisely. If not, there are plenty of other groups that may be far more deserving.

For more information on charities, please visit the National Charities Information Bureau at: http://www.give. org

To review some IRS Form 990’s related to various IC groups, please visit: http://www.guidestar.org. You’ll have to register (it’s free). To download the IRS forms, look for the “beta version” links… which give you direct access to the forms. You might find yourself surprised.

We, at the ICN, believe that your donor dollars would be the most appreciated when given directly to IC research centers, such as the University of Maryland. We offer an ICN Donation and Giving Guide that lists promising research centers and projects. http://www.ic-network.com/mgt/donations.html

Reducing Skin Irritation and Urine Burn Common In Interstitial Cystitis and Bladder Pain Syndrome

(By ICN Founder Jill O.)

Who would have guessed that one of the most effective self-help strategies costs under $3.00 and can be found at almost every drug store. What is it? Well, before I spill the beans, let me tell you how I heard about it.

In my early twenties (years before my IC began), I developed vulvodynia - an intense irritation of the vulva and perineum. It felt like a raging yeast infection (as if someone had rubbed sandpaper over my vulva) yet, when I visited my ob-gyn, he never found yeast and usually said that I “looked normal” down there. After several visits, he explained it by saying that I had most sensitive skin that he had ever seen and that I would have to learn to live with it. So, I tried to.

Wearing pants was painful and uncomfortable. When buying jeans, I desperately looked for brands that had non irritating crotch seams. I even remember cutting those seams down so that they wouldn’t chafe so much. Thank goodness for yoga pants. Made of a cotton knit, they have enough stretch to accommodate our randomly swelling IC belly, do not bind in the crotch area and are completely comfortable.

It didn’t take long for me to figure out that soaps were very irritating, especially bubble baths. Underwear washed in most commercial laundry detergents (i.e. Cheer, Tide etc.) would, within five minutes, cause my vulvodynia to flare. Menstrual pads were drying and chafing. Riding a bicycle was impossible. And, as my grandmother passed down to my mother, I learned about wearing “white cotton” underwear, not using soap, using only baking soda in my bath water and wearing stockings rather than pantyhose.

My vulvodynia didn’t take kindly to the onset of my interstitial cystitis and, like many of my fellow IC sufferers, I struggled with uncomfortable “urine burn” - a feeling of hot urine burning the vulva and perineum. It was with great frustration that I attended a local support group for vulvodynia, squirming on the 20 mile drive to Petaluma. I was given one of the best self-help tips that I have to share with both IC and vulvodynia patients today! Buy a perineal wash bottle from your nearest drug store. Do not buy any bottles that have chemicals, cleansers or liquid in them. It should be empty. Fill it ONLY with plain, simple water or bottled spring water if you live in an area with hard water. Every time you use the restroom, rinse yourself off thoroughly and pat gently dry. If your urine feels hot, use cooler water to soothe those tender tissues.

It’s been about twenty years since I started using a wash bottle and my vulvodynia symptoms now rarely appear. It has reduced my incidence of UTI’s and has an unexpected benefit of being very soothing after sex. It was $3.00 well spent. If you can’t find a bottle locally, we offer them for sale in the ICN Shop . Look for it under “restroom supplies.”

NIDDK Seeks Studies in Pelvic Pain and Other Syndromes

RFA Calls for Multidisciplinary Approach to Study of Chronic Pelvic Pain

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has issued a Request for Applications (RFA) for a multidisciplinary approach to the study of chronic pelvic pain (MAPP).

The MAPP Research Network will adopt multisite, multidisciplinary, highly collaborative, novel approaches using traditional urologic and nonurologic expertise to address key questions in understanding chronic pelvic pain syndromes. This effort is expected to lead to critical new insights into the underlying causes of interstitial cystitis (IC)—also called painful bladder syndrome (PBS)—and chronic nonbacterial prostatitis (CP), or chronic pelvic pain syndrome (CPPS), as well as possible links between these conditions and comorbid disorders, which have the potential for creating future prevention and treatment strategies.

In a separate complementary effort, the NIDDK is developing new and more comprehensive research definitions and criteria for IC/PBS and CP/CPPS that will adopt the concept of systemic disease. With these new definitions and criteria, researchers hope to identify more specific and relevant patient profiles for IC/PBS and CP/CPPS.

Frustrating Conditions

IC/PBS causes recurring discomfort or pain in the bladder and surrounding pelvic region. CP/CPPS causes pain in the lower back and genital area. Urinary urgency and frequency commonly occur in both IC/PBS and CP/CPPS patients. Both conditions frustrate patients and their health care providers because so little is understood about the source of the pain. Effective treatments are equally elusive.

The NIDDK has supported a series of initiatives aimed at understanding conditions that cause chronic pelvic pain, including the
• Interstitial Cystitis Database Study
• Interstitial Cystitis Clinical Research Network
• Boston Area Community Health Survey
• Rand IC Epidemiology Study
• Chronic Prostatitis Clinical Research Network
• Chronic Prostatitis Clinical Database

The NIDDK also has funded many basic research studies focusing on the biology of the bladder and prostate in an attempt to better understand the pathological basis of urologic chronic pelvic pain conditions. Despite these efforts, much remains to be learned regarding the etiology and natural history of these diseases.

The clinical and basic research studies developed by the NIDDK and the research community have traditionally focused on the bladder and prostate as the origins of disease for IC/PBS and CP/CPPS, respectively. However, recent epidemiological studies have shown other illnesses that share chronic pain as a major symptom are often associated with these urologic conditions, including fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome. These findings suggest the possibility of a common underlying pathophysiology in chronic pain disorders that has not been adequately addressed in IC/PBS and CP/CPPS studies.

MAPP Research Network Structure and Organization

The MAPP Research Network will include up to six Discovery Sites that share the common goal of improving the understanding of the fundamental basis of disease pathophysiology and natural history—including predisposition for IC/PBS or CP/CPPS—and assessing potential relationships between IC/PBS and CP/CPPS and other chronic pelvic pain syndromes.

“The NIDDK’s MAPP Network, through its unique approach, will address many long standing questions regarding urologic chronic pelvic pain conditions and will provide an improved knowledge foundation for developing effective treatment and intervention efforts,” said Chris Mullins, Ph.D., the program’s director and the NIDDK director of Urology Basic Cell Biology Programs.

While the specific scientific interests of each Discovery Site may differ, they all must demonstrate a dedication to the study of IC/PBS or CP/CPPS as a central focus. Individual Discovery Sites will conduct multiple projects focused on the scientific priorities of the MAPP Network.

Efforts will involve both site-specific studies and highly collaborative multisite, or trans-network, studies using the combined resources and varied expertise of the MAPP Network. The MAPP Network will include two separate Core Sites that will serve as common resources:
• The Data Coordination Core (DCC) will provide expertise in the overall administration and coordination of multisite research studies and in data analysis for individual Discovery Site projects and multisite trans-network studies.
• The Tissue Analysis and Technology Core will provide tissue (biopsy, serum, and urine) collection, banking, annotation/blinding, distribution services, and histological and tissue morphology analyses. The Core also will provide genomics and proteomics analyses and generate assay platforms—such as for genomics and proteomics studies and tissue expression analyses—for multisite efforts and individual Discovery Site efforts, as needed.

In addition to providing these functions, Data Coordinating Core and Tissue Analysis and Technology Core funds will support MAPP Research Network Ancillary Projects beginning in the first year. These projects, which will be designed to enhance multisite scientific collaborative projects at two or more sites, will be developed by the MAPP Research Network Steering Committee and will be reviewed for scientific merit and feasibility by an external Scientific Advisory Committee.

The NIDDK anticipates that among those selected to serve as Discovery Site or Core Site directors and as project leaders on individual Discovery Site projects will be investigators from diverse fields and those who have not been traditionally involved in studies of urologic chronic pelvic pain, but who have expertise in relevant disciplines.

For more information, email Chris Mullins at MullinsC@extra.niddk.nih.gov.

NIH Publication No. 08–5743
March 2008

My head almost popped off this morning as I was reading the newspaper. The great cheapskates in the world (i.e. businesses trying to save money by using cheap products from China), have, yet again, put our health at risk. How, you ask???

If you haven’t been following the recall of the blood thinner Heparin (yes, Heparin is also used in rescue instills) that began several weeks ago… you should. Baxter International and the FDA began noticing significantly higher rate of side effects with a recent lot of products. Normally, they received 60 or so complaints a year… but, in just January 2008, they had 150 reported side effects….. such a significant increase that it requires much further investigation. Apparently nineteen patients have now died.

According to the Baxter press release of January 28, 2008 … adverse reactions have included: stomach pain or discomfort; nausea; vomiting; diarrhea; low blood pressure; chest pain; fast heart rate; dizziness; fainting; unresponsiveness; shortness of breath; tachycardia; drug ineffectiveness; burning sensation; redness or paleness of skin; abnormal sensation of the skin, mouth, or lips; flushing; increased sweating; decreased skin sensitivity; headache; feeling unwell; restlessness; watery eyes; throat swelling; thirst; and difficulty opening the mouth. Some of these reactions may be severe or life-threatening. Rather chilling, eh? Read on!

Today, the Washington Post reported that testing of the heparin has revealed contamination of 5% to 20% of every sample tested. The contaminant is apparently a molecule similar to heparin that normal tests used by the industry don’t detect. It was a new, more sensitive testing method which found the contaminant.

The question is… was the contaminant part of a botched production/manufacturing method or was it “intentionally added to reduce costs.” Gee, doesn’t that sound familiar?? It should. Remember the melamine debacle last year where it was discovered that some suppliers in China were adding plastic melamine to artificially raise protein levels of products to be used in pet food?? Now, can you imagine a similar circumstance for drugs that are then shipped around the world?? You should.

According to the New York Times and CNN, Baxter International gets the active ingredient for Heparin from China… specifically a manufacturing plant outside of Shanghai. Heparin is made from pig intestine. The FDA also admits that they have NEVER inspected that plant.

Baxter and FDA representatives are now scrambling for answers. Baxter Chief Medical Officer Janet Woodcock said “We don’t know how… this compound got into the heparin but we are aggressively investigating it.” Baxter has also recalled all active ingredients “sourced from China that showed signs of possible contamination.”

Yes, I must clearly state that they are still unsure of exactly what is causing the adverse events. The FDA suspects that it is the contaminant but that IS speculation at this point. I have a logical suspicion. Given the absolutely terrible water quality and sewage treatment (or lack thereof) problems in China, could this have come from the water and/or foods fed to the pigs? Clearly, additional research is needed and must come quickly before we put yet more lives in danger.

I was dismayed to learn that drug manufacturing and/or the development of drug active ingredients is a fast growing industry in China. Given their track history of environmental contamination and track record of putting cash ahead of product quality and safety, I think we’re foolish to purchase anything from China that is meant to be consumed and/or placed in our bodies.

Maybe we need new legislation that requires a disclosure of where the drugs are source from. If I could see “Some ingredients imported” or “Made in China” on the label, I wouldn’t buy the product. I’d rather buy a product made from ingredients found in the USA that supported the US farmers, employees and, most of all, complied with our much better product safety and testing standards. We do have a thriving pig industry in the USA, don’t we??

Nuff said…

Jill O.

References:

1- http://www.baxter.com/about_baxter/n…rin_multi.html
2 - http://www.cnn.com/2008/HEALTH/03/05…ant/index.html
3 - http://www.nytimes.com/2008/02/29/us/29heparin.html?hp
4 - http://www.washingtonpost.com/wp-dyn…ail/components
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Yesterday, the ICA announced by e-mail that founder & President Vicki Ratner MD has “stepped down” from her position as President of the organization. A new Executive Director, Barbara Gordon, will begin work in early March 2008.

We would like to take a moment to acknowledge Dr. Ratner who is, easily, the most recognized IC figure in the world today. She has been with the ICA for more than 25 years as its President and/or as a paid staff member. She had a tenacious drive to increase funding for IC research which, during her tenure, increased dramatically. From lobbying Congress to serving on various NIDDK committees, chairing IC conferences to working with various media outlets, she has been a pivotal figure in the IC movement. Her departure comes as a huge surprise.

In fifteen years, I rarely heard Dr. Ratner talk publicly about her IC. I find it impressive that she was able to travel so extensively and work so diligently given the challenges of having IC. She certainly deserves our accolades for being such a passionate IC advocate.

This transition comes at a challenging time. Not only is the IC international research community still debating a possible name change for IC, many researchers are now accepting the fact that IC is probably far more than a bladder disease. The latest MAPP study launched by the NIDDK is exploring how IC is related to its most common related conditions such as irritable syndrome and vulvodynia. It was also with great disappointment that we learned that the NIDDK funded clinical trial for a new IC treatment (Cellcept) was terminated just a few weeks ago due to a lack of positive results.

Pharmaceutical companies that have helped develop and fund IC outreach efforts are in transition, particularly with this difficult economy. Many see the profit potential of the IC community as limited and have moved on to other more profitable medical conditions. Others have products which, over time, have lost popularity as an IC treatment (i.e. DMSO). Luckily, some new over-the-counter supplements have created interest and excitement with a few new companies.

Similarly, the IC patient movement continues to change and diversify. No longer is the ICA the only patient organization in the USA or world. The IC Network continues our focus on needs of the IC patient, offering more than 300,000 support sessions per month in our support forum, live chats and phone support. Pure-Hope, formerly ICU Texas, is a new national non-profit focusing on both IC and pelvic pain whose strength lies in creating conferences and events. Local IC groups continue to function independently proving that they don’t need a national organization to manage them. A wide variety of international IC/PBS patient organizations now exist. Funding has become far more competitive with so many more hands reaching for a piece of the pie.

So, the question is, where will the ICA go in the coming years? Their success is clearly research and we hope that these efforts continue. We’re particularly excited about research “beyond the bladder.” If you’ve spent any time with an IC support group, it’s crystal clear that the relationship between IC and it’s related conditions must be explored in depth if we’re to uncover why and how these conditions occur simultaneously. Why do so many of us have anxiety disorder and IBS?? Why do women with IC often struggle with vulvodynia. How does IC vary between men, women, children and/or cultures?? What are the most promising new treatments under development?? For every new fact learned in a research study, it seems as if a dozen more questions emerge. The race is on and the ICA is an important part of our future.

We also hope that there will be more openness in the IC community in coming years:

• We hope that researchers with divergent and/or new viewpoints will have the opportunity to have their voices heard, particularly at the federal level.
• We hope that national and regional patient group leaders in the USA will gather together, atleast once a year, to discuss our common goals for the IC community. We have urgent issues that need attention, such as the dramatic rise of false cures on the web that are bilking patients out of thousands of dollars. The power of our collective diversity and individual organizational strengths has yet to be tapped. Collaboration, not competition, is vital to our overall success.
• We hope that more IC educational events will occur, particularly in areas that have been previously underserved, particularly the southeast.
• We hope that the youngest and newest members of the IC community will speak out on their needs, hopes and dreams and participate actively in our organizations. (Fifteen years ago, when we were new, we were laughed at for wanting to offer IC support on the web!). The door must always remain open to the next generation of our community. If that door is shut, the IC movement will lose our ability to respond, in a timely way, to the changing needs of the IC patient.

Yes, our wish list can go on endlessly but time is short today. I’d like to welcome Barbara Gordon to the IC community. She has taken on a large and complex job during what may be the most difficult period for the IC movement. We wish her success.

Jill Osborne, MA - ICN President & Founder

Age 47, Diagnosed at 32, First Symptoms at 13.

I’m repeating here what I just offered by PM to an IC patient who was frustrated with a local urologist who wouldn’t offer more than the basic treatments. I hope this helps us all understand just how these clinics differ, etc. - Jill

Local Urology Clinics
The smaller urology offices in smaller towns or just small clinics run by one or two doctors are usually the first line of intervention but they often don’t have the funding, resources, experience and/or knowledge of newer therapies. They often stick to the conventional Elmiron, DMSO approach to treating IC though many more are finally using rescue instillations with great success.

Regional Urology Clinics
Thus, we then look for larger clinics in more urban areas that have a strong interest in IC, female urology and/or pelvic pain. They tend to have five or more urologists on staff, one of which is usually interested in chronic bladder disorders or female urology. They may also have a pelvic floor specialist that they refer patients too. These clinics usually have the resources to attend more conferences and often offer the traditional AND more experimental therapies, such as botox. Dr. Jay Burstein and the DeKalb Clinic (Illinois) is a good example of a regional urology clinic.

University Medical Centers & Medical Schools
We then look at University run Medical Centers and Schools which function, primarily, as referral centers for the more complex cases that the smaller clinics can’t or won’t handle.

The advantage of a university medical center urology clinic is that they see far more patients, have more experience with diagnostic methods (inotherwords, they often do a cystoscopy with less pain and discomfort because they have so much more experience.) Stanford University, for example, the primary referral center for Northern California and they are superb at diagnosis, assessment and offer a wide variety of treatments available.

Universities are also far more heavily involved in some IC clinical trials that are testing new potential treatments for IC. Many pass rigorous reviews from the National Institutes of Health that prove that the doctors have sufficient knowledge, staff and resources to conduct studies. These researchers are almost always found at the big IC conferences and thus are on the absolute cutting edge of IC.

IC Specific Clinics
Though few and far between, there are clinics devoted specifically to IC/pelvic pain. Dr. Moldwin, for example, does run an Interstitial Cystitis Center at the Long Island Jewish Medical Center. It doesn’t pay all the bills though and may just devote two days a week to IC though some centers do offer daily instillation therapy. Most urologists see a wide variety of patients with other conditions besides IC.

What I look for, often, are doctors who attend conferences, conduct some research and facilitate IC support groups because that tells me that that doctor really understands the support and care that IC patients need.

Hope that helps!

Jill

One of the criticisms we see frequently are worries that many nurses, particularly those in ER’s and general practices, don’t seem to really know about IC. True. IC courses are usually found at urology conferences such as the event below. The Society of Urologic Nursing has done a superb job educating nurses about the latest advances in interstitial cystitis/painful bladder syndrome. Below is their announcement for their upcoming 2008 symposium on pelvic pain…. which will, yet again, be discussing IC. - Jill
Urologic Nurses To Enhance Their Knowledge Of Pelvic Pain, Urodynamics Knowledge At Annual Symposium

The Society of Urologic Nurses and Associates (SUNA) will hold its Annual Symposium: Pelvic Pain and Pelvic Floor Disorders, February 28-March 2, 2008, at the Tampa Marriott Waterside Hotel and Marina, Tampa, FL. The symposium will highlight the latest evidence-based treatments for pelvic pain and pelvic floor disorders, as well as urodynamics and advanced urologic practice.

Participants will have the opportunity to earn continuing education credits, attend research luncheons, network with colleagues and explore the exhibit hall to learn about technologies and products. A dynamic faculty of nurse practitioners, physicians and physical therapists will present education sessions. The complete registration brochure is available on SUNA’s Web site, [url]http://www.suna.org[/url].

Program

On Thursday, February 28, The Basic Urodynamics preconference workshop will begin. This 9-hour workshop is part of the symposium’s comprehensive 18-hour urodynamics (UDS) track which meets the training recommendations set forth by the International Continence Society (ICS). Those who participate in the complete program will earn a SUNA certificate of attendance for urodynamics that is approved by ICS.

On Friday, February 29, other preconference workshops will be offered covering such topics as pelvic pain, interpreting and documenting urodynamic studies, biofeedback and electrical stimulation, and urinary incontinence in long term care.

On Saturday, March 1, Joseph Schaffer, MD, will present the opening session, “Approach to Pelvic Pain in Women.” He will evaluate different advances and treatments for female pelvic pain.

Concurrent sessions will run March 1-2, and are divided into four tracks. Topics include:

- Advanced Practice: Urologic coding and documentation; understanding the role of the continence nurse specialist; mental health issues and chronic pelvic pain among Latinos; treating genital tract infections.

- General: Urinary tract infections; pediatric urinary incontinence; shy bladder syndrome; bladder outlet obstruction in women.

- Pelvic Pain/Pelvic Floor Disorders: Using botulism toxin in pelvic pain; gastrointestinal disorders associated with pelvic pain; treating interstitial cystitis; pharmacologic management of pelvic pain.

- Urodynamics: Live urodynamics studies; hands-on urodynamics instruction workshops; performing urodynamics through the life span.

The SUNA Foundation will host a raffle on March 1. Money raised will help the Foundation fund research projects related to urologic disease or treatment and award SUNA members with scholarships for advanced education or specialized training.

Continuing Education

The SUNA Annual Symposium will offer a total of 14 contact hours of continuing education in nursing. Additional contact hours will be given for the preconference workshops and sponsored symposia.

SUNA is an approved provider of continuing nursing education (CNE) by the American Nurses Credentialing Center’s Commission on Accreditation (ANCC-COA).

Registration

Complete conference information and online registration information are available on SUNA’s Web site, [url]http://www.suna.org[/url].
Society of Urologic Nurses and Associates

(Reposted from the ICN Forum)

I was so saddened to learn that Benazir Bhutto, the former Prime Minister of Pakistan was assassinated this morning. As a woman, she was a role model for all women living in the middle east. She proved, much to the consternation of misogynist Islamic extremists, that women are smart, capable and fully qualified to lead ANY country, including the USA.

That she was killed rather than be allowed to, in all likelihood, win the Pakistan election early next month proves just how vulnerable women are throughout much of the world. Women are devalued. Women are considered property. Women are rarely allowed to go to school or become a professional. We are, in the viewpoint of extremist Islamists, simply slaves or, better yet, the new face of the suicide bomber.

It’s ironic that in my work with interstitial cystitis, this point is driven home day after day after day. I talk with women in the USA who:

#1 - Don’t believe that they should or could ask their doctors questions.
#2 - Who don’t ask for help when they need it for fear of reprisal by our medical system and/or family members.
#3 - Who have barely been educated or seek to educate themselves. Some honestly don’t know the difference between their urethra and their vagina. Worse, ask them what treatments they’ve had and they say “I don’t know. I just let the doctor do whatever he wants.”

Come on ladies!!!!! If we don’t stand up and fight. If we don’t prove, through our daily actions, that women are capable, smart and determined…. we will slowly but surely lose yet more of our collective rights in the world. Do you realize that a woman with IC in the middle east often aren’t allowed to be treated?? It’s appalling!!!!

Please stand with me…. grieve for Benazir Bhutto and what she could have done for women in the middle east. We must fight extremism whereever and whenever we can.

Jill