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Home > MSAA Publications > The Motivator > The Motivator: Fall 2008 > Cover Story - Women with MS

COVER STORY

Women with MS

Family, Health, and Happiness

Written by Maryann B. Hunsberger
Reviewed by Jack Burks, MD
Edited by Susan Wells Courtney

Eight months before Debbie Gomez-Trost experienced her first MS symptom, she and her husband Bob Trost had built their dream house. With six-year-old triplets, the family needed the space a new home could offer. Her job as a microbiologist gave Gomez-Trost the financial security to feel that the time was right for a move. Later that year (in 2004), Gomez-Trost couldn't move her right leg or lift her right foot. "I thought I pinched a nerve," she says.

Appreciating Life
Much More

Debbie's Story Photo Read Debbie's Story.

When Gomez-Trost's neurologist told her she had multiple sclerosis, she immediately thought about her family and career. Would she be able to keep the house clean, provide clean clothes, prepare hot meals, and help the children with their homework? And how might this affect her ability to continue a full-time job?

"I worried about how I'd keep up with everything," says Gomez-Trost. "For parents with MS, we have the added responsibilities of raising the children, cleaning the house, and helping with the homework. "

According to Connie Easterling, a nurse practitioner who serves as clinical coordinator of the MS Care Center, Neurological Services of Orlando, MS can affect women differently. "MS is two-to-three times more common in women. Some experts believe the ratio may be as high as four-to-one. The emotional impact of dealing with the diagnosis can be overwhelming for some women. They may take the whole rhythm of the family, along with keeping the family balance in place, more personally. When MS is diagnosed, there may be guilt due to the possible impact on the family. "

MS affects women differently in other ways as well. Not only are women's nervous and immune systems different from men's, but women have reproductive issues to consider. Side effects from drugs may also vary between the genders, as a result of these differences.

Similar to Gomez-Trost, women diagnosed with MS have many questions about how their disability will affect them throughout their life. They want to know how they will manage as women and in the different roles they fill, such as girlfriends, employees, wives, and mothers.

Good News about Pregnancy and Raising Children

Not long ago, many physicians discouraged women with MS from becoming parents. Cheryl Faber, MD, a St. Louis, Missouri-based neurologist who treats women with MS, explains, "Physicians feared that MS would flare up following pregnancy, preventing women from parenting. They also thought that progressive disability would cause difficulty in raising a family. Doctors thought avoiding pregnancy would be an answer.

"We now have better treatment options for women with MS. Newly diagnosed patients using appropriate treatments can often go on to live a full life without disability, if their disease course isn't very aggressive. With the improved outcomes that we now have for MS, most patients can live decades without incurring a lot of disability. Most people find that giving up parenthood isn't a tradeoff, since women with MS can raise children."

Easterling explains that MS does not impair fertility or lead to miscarriage."Pregnancy has a positive effect on MS. It's a natural immunosuppressant. Higher levels of natural corticosteroids and estrogen are present during pregnancy, so relapses decrease by about 70 percent during the second and third trimesters. "

Photo 2

After childbirth, however, problems can develop, since exacerbations increase 40 percent in the first six months after delivery. Despite this risk, studies show that this does not impact one's long-term prognosis. "As hormonal levels normalize, women are at greater risk for exacerbation. Therefore, good postpartum care with both a gynecologist and a neurologist is important. Neurologists often recommend that women go back on disease-modifying treatment to prevent exacerbations. Since women should not breastfeed while taking these medications, they must make personal choices in deciding what is best for them. "

Faber explains that raising children could benefit women with MS. "For people who do want a child, I tell them not to let this disease rob them. Most people find that having children is an integral part of life, so they are willing to do the extra work to raise children and keep their family together. Being a mom is tough even for able-bodied women, so it becomes harder with a disability. Yet, the rewards are there. It's an obvious added stress, but a blessing in many ways."

Women who use wheelchairs due to MS can parent with some added challenges, asserts Faber. "Mothers in wheelchairs are still moms who can do mom stuff. They just have some added work involved. I have a friend who uses a wheelchair and is adopting. She is cutting back on her work hours to focus more on being a mom. None of us can do everything all the time. Being disabled makes things more difficult, but it is doable. "

Easterling stresses that women with MS should have adequate levels of support in the home when a baby arrives. New mothers might ask family, friends, or church members to assist. Some might hire part-time help. When a woman develops MS after having children, some might use part-time daycare services. Other women, such as Gomez-Trost, have extended family members who can help with childcare.

Either way, Faber continues, "Most patients who choose to have children are proud and satisfied that they decided to have families. MS shouldn't stop women from having a full life."

Improved Quality of Life

MSAA's Chief Medical Officer Jack Burks, MD, explains that MS can create enormous challenges for women. MS is typically diagnosed in the "prime" of life, when young people are preparing for their futures in terms of education, career, and family. This can be a very emotional time for a woman, and so much depends on her physical and mental health, as well as social and professional activities.

"The number-one advancement to help women with MS has been the development of disease-modifying therapies within the past 15 years, " states Dr. Burks. "These medications are improving quality of life tremendously, and the future looks brighter than ever before for individuals with MS. More people are now able to continue working while raising families, and this just was not possible for many individuals 15 years ago, when these long-term treatments were not yet available. "

The management of symptoms and side effects has also been greatly improved in recent years. "This is not limited to taking medications," explains Dr. Burks. "For example, individuals with MS fight fatigue by learning ways to avoid becoming overheated, along with strategies for conserving energy. Healthcare professionals now know the value of exercise and rehabilitation for optimal range of motion and strength, improving activities of daily living, as well as cardiovascular and other benefits. Certain alternative and complementary therapies (such as tai chi, yoga, guided imagery, self-hypnosis, biofeedback, and massage) are yet another avenue of treatment that many MS patients are finding useful in helping to manage their symptoms and improve their outlook. "

In summary, the advancements in the medical treatment of MS and its symptoms have changed the future for individuals with MS. Women today may look forward to a far better long-term prognosis. This means that while many challenges may still exist, their dreams and goals in terms of education, career, and family, are no longer beyond reach for many women with MS.

Enjoying optimal health, and continuing with daily activities, requires more than just treating a woman's MS. She also needs to keep up with regularly scheduled health examinations and testing, along with eating right, exercising, and getting a good night's rest. In the sections to follow, these vital health-related issues are explained - along with helpful strategies for staying well.

General Healthcare for Women with MS

As with all women, those with MS need to maintain their health. Women can take an active part in this by keeping up with routine blood tests for blood sugar, thyroid, and cholesterol, as well as screenings for high blood pressure.

Easterling points out that individuals with MS have the same rate of high blood pressure, diabetes, and high cholesterol as anyone else, so checkups are important. "Women with MS must address and treat these conditions the same way a person without MS addresses and treats them. "

Photo 3

While these tests and exams are just as significant for men, some tests and exams are specific to women. Easterling stresses that the following tests are important for women with MS:

  • Clinical breast exam: Annually
  • Self-breast exam: Monthly
  • Pap Smear: Start at age 21 (earlier if sexually active), and then every one to three years if sexually active.
  • HPV Vaccine: Adolescent girls (approved by the FDA in 2006, the Centers for Disease Control and Prevention [CDC] recommends that adolescent girls [ages 11 and 12] be routinely vaccinated; girls and young women [ages 13 to 26] may receive "catch-up" vaccinations. Interested individuals and/or their guardians should consult their physician for more information.)
  • Bone Density Scan: Start before age 60 if at risk; risk factors include steroid use, family history, lack of exercise, alcohol use, thin body, and smoking.
  • Mammogram: Every one to two years, starting at age 40; annually after age 50.

Since the Americans with Disabilities Act (ADA) requires accessible construction on only new buildings, older medical offices are often inaccessible. Most women with mobility impairments are familiar with the difficulties of getting healthcare. Many women are not able to climb steps, push their wheelchair up ramps with broken slats, or fit through too-narrow doorways.

Inaccessible exam tables often present an obstacle. Despite the availability of hydraulic exam tables that lower and rise, most physicians do not purchase these tables. If a medical practice is not comfortable helping a patient onto the table, a woman may go home without receiving treatment.

"In gynecology offices, women with physical disabilities often can't get into the office or are turned away. The practices frequently aren't open to seeing women with lower extremity spasticity or weakness, since the office may not have enough support to help with the examination. They don't want to be responsible for transferring the patient onto a table," explains Easterling. She recommends contacting a local MS support group to find names of physicians who are open to helping patients. Some women call doctors' offices in advance to alert the staff of their need for assistance. Others choose to bring a friend or relative to help them with these barriers.

Chronic health conditions can be confusing to manage. Marie Savard, MD, an internist and author of How to Save Your Own Life, suggests writing questions before a doctor visit and maintaining a health journal to track symptoms, weight changes, complaints, and medication side effects. A journal can also include the names and phone numbers of all doctors, dates of doctor visits, and information about allergies, current medications, and surgeries. Health magazine's October 2008 issue reports that the average patient has 22 seconds to speak before her doctor interrupts her. Therefore, assuring that patient and doctor have discussed all questions before leaving is important.

Easterling tells new patients to learn as much as possible about MS. She advises them to take advantage of counseling to cope with changes in their lives. She also recommends that women do the following to maintain general good health:

  • Exercise regularly
  • Eat a well-balanced diet
  • Drink fluids
  • Maintain a healthy weight
  • Consume adequate calcium and vitamin D
  • Folic acid daily for women of child-bearing age
  • Limit alcohol consumption
  • Don't smoke
  • Use complementary and alternative treatments cautiously
  • Use protection against sexually transmitted diseases

Medical Issues for Women with MS

According to P.K. Coyle, MD, females differ neurologically from males, in areas such as spatial and language skills. They also differ regarding autoimmune response, since more females have autoimmune disorders, including myasthenia gravis and systemic lupus erythematosus (commonly referred to as "lupus"), and others.

MS is also more dominant in females. Sex hormones are partly responsible for this gender preference, since these hormones affect both the autoimmune and nervous systems in various ways. These hormones, which fluctuate constantly in females, can also affect cognitive function and coordinated movements.

Medications used to treat MS can bring unique concerns regarding women's reproductive health, and some should not be used if planning a family. Therefore, women with MS are in the unenviable position of having to decide whether to discontinue disease-modifying medications while pregnant or trying to become pregnant, or to give up breastfeeding to receive treatment, for example.

Other medications include tricyclic antidepressants. Used to treat pain and depression, these types of drugs can excrete into breast milk. Certain pharmaceuticals for fatigue, such as Symmetrel ® (amantadine), also excrete into breast milk. Women with MS should speak with their doctor about their present medications, and before taking any new medication, to find out about possible side effects - including any risks while pregnant or breastfeeding, along with any drug interactions.

Glucocorticoids, such as methylprednisolone, speed up recovery from MS exacerbations, yet can cause loss of bone density. This is an important issue and physicians need to monitor and potentially treat patients for this risk of thinning bones. High-dose interferon-beta therapy can affect menstruation by causing spotting, clotting, or delayed menses. It may also have the potential to cause a miscarriage.

According to Easterling, 50 percent of women with MS report that symptoms worsen the week of and before menstruation. These symptoms can include increased fatigue, poor endurance, depression, bladder dysfunction, spasticity, dyscoordination, weakness, and visual changes. One option for symptom management is oral contraceptives. This, again, requires a balancing act for women taking medications that might interfere with oral contraceptive use.

A variety of medications, including a simple antibiotic, may potentially decrease the effectiveness of oral contraceptives. With this in mind, women with MS should consult their gynecologist and neurologist on any potential drug interactions. Having these two medical specialists working closely with a patient's treatment is important.

Faber explains that the FDA divides MS medications into three categories: B, C, and X, based on their level of danger to pregnant women and fetuses. While some medications cause fewer complications, some are highly toxic.

In general, for pregnancy category B: animal reproduction studies have failed to demonstrate a risk to the fetus and there are no adequate and well-controlled studies in pregnant women; or, animal reproduction studies have shown an adverse effect (other than decrease in fertility), but adequate and well-controlled studies in pregnant women have failed to demonstrate a risk to the fetus during the first trimester of pregnancy (and there is no evidence of a risk in later trimesters). Copaxone ® (glatiramer acetate) is in this category.

In general, for pregnancy category C: animal reproduction studies have shown an adverse effect on the fetus, there are no adequate and well-controlled studies in humans, and the benefits from the use of the drug in pregnant women must be weighed against its potential risks; or, there are no animal reproduction studies and no adequate and well-controlled studies in humans. The interferons (Betaseron ®, Avonex®, and Rebif®) as well as Tysabri® (natalizumab), are in this category.

In general, for pregnancy category X: studies in animals or humans have demonstrated fetal abnormalities; or, there is positive evidence of fetal risk based on adverse reaction reports from investigational or marketing experience; or both. Novantrone ® (mitoxantrone) is in this category. Women of child-bearing years should discuss the risks and benefits of Novantrone with their physician, giving specific attention to the effects on fertility and pregnancy.

Please note that detailed and specific package labeling on medications must follow the exact wording for each category.

"Doctors typically advise women to avoid taking any of these medications while pregnant or breastfeeding, to reduce risk, " says Marijean Buhse, PhD, a nurse practitioner at the MS Center at North Shore University Hospital and a professor of nursing at Stony Brook University.

Depression

About 70 percent of women with MS experience depression. Buhse says depression could come from lesions on the brain, from medication side effects, or from the challenges of living with a disability. Physicians treat this symptom with antidepressants and counseling, but Buhse also recommends exercise to alleviate depression. The type of exercise depends on the individual's limitations.

Buhse explains, "Exercise increases endorphins in the brain and decreases how quickly disability progresses. Literature shows that a person who steadily exercises may help to slow her rate of disability. Some people might take a walk or use a treadmill. Others might like to take a bike ride or use a stationary bike. "

Noting that counseling, medication, and exercise work more effectively together, Easterling also recommends the following ways of reducing depression:

  • Stay involved
  • Be realistic about what you can and cannot do
  • Maintain strong bonds with family and friends
  • Think positively about your health
  • Set goals
  • Talk about your feelings
  • Take part in fun activities and relaxation
  • Maintain a sense of hope

MSAA offers a free informational booklet titled Understanding and Treating Depression in Multiple Sclerosis. Copies may be viewed or downloaded here. Copies may also be ordered by calling MSAA's Helpline at (800) 532-7667.

Photo 4

Cognitive Changes

According to Rosalind C. Kalb, PhD, a psychologist and author of Multiple Sclerosis: A Guide for Families, about 50 percent of women with MS have cognitive changes caused by damage to nerve fibers in the brain and spinal cord. Buhse points out fatigue can also affect cognition. "If you're too tired, you can't think." Cognitive changes can affect the following functions:

  • Memory: Short-term memory is most affected, which requires one to spend more time learning new information. Memory loss can lead to problems at home or at work.
  • Attention and concentration: Focusing on details and multi-tasking may be difficult at times, since these require uninterrupted attention.
  • Word-finding: This deficit can disrupt conversation as the person speaking has difficulty recalling the right words, which can also lead to frustration.
  • Slowed information processing: A slowing of thought processes and response time can cause difficulty when quick processing skills are necessary.
  • Reasoning, problem solving, judgement: When one has trouble making the correct decisions, this can affect performance at work and create issues at home.
  • Visual-spatial abilities: Among other things, this can affect safe driving because it may cause someone to forget which pedal to step on or which way to turn.
  • Executive functioning: Planning, prioritizing, and scheduling become difficult.

Current treatment for cognitive changes includes cognitive rehabilitation and medications, such as disease-modifying therapies, which may possibly help with cognition. Drugs to treat Alzheimer's disease are sometimes used, but so far, study results with these drugs and MS have been mixed.

Social Issues

MS can also cause difficulties socially. According to Coyle, women with MS are more likely to have a poor quality of life from being socially isolated, since they are less likely to be involved in homemaking, educational, or vocational activities.

Peggy Walsh, a psychotherapist in private practice in Pennsylvania, believes women with MS must work at creating social opportunities. "When people become socially isolated, they can become depressed. They need to protect themselves by building up a social structure and staying in contact with other people in the social world. "

When a woman feels well enough, she should set up a lunch date or take a yoga class. "Even getting out to physical therapy keeps women in touch with other people and gets them out of the house. Participate in MS support groups and workshops, or take part in religious activities. Without social structure, it's too easy to become isolated. People with MS have to be proactive to pull themselves into the world again, " says Walsh.

Regaining Self-Esteem

Photo 5 As women with MS develop neurological deficits, gain or lose weight, or require the use of orthopedic aids, their self-esteem might suffer. "Patients with MS might walk differently, use a cane, or eventually use a wheelchair. Some become ataxic, which means they have a wide-based walk and appear drunk. This affects how women feel about themselves and how people look at them, " notes Buhse.

Women with MS sometimes find it too difficult to apply makeup, fix their hair, or shower. Buhse points out that this can have tremendous impact. "MS strikes when women are young and typically energetic. Yet it is common for women with MS, even at a young age, to become exhausted. While they want to take care of themselves in terms of appearance, a woman may sometimes be too tired to do this. "

Walsh feels that this inability to care for one's appearance can affect women more profoundly than men. "People judge women's looks more harshly, so women deal with this more than men. Women tend to be caretakers, so it's hard to ask others to help by dyeing or blow-drying their hair. Women should ask their partners and friends how they see them to build their self-esteem. "

According to Buhse, women with MS should talk with their healthcare provider about these issues. "Body image doesn't often come up in medical conversation. But symptoms relating to body image - such as weight gain - can come up. If a woman gains weight, we talk about what she is eating and ask her to make a food diary. We look at medications and perhaps change them. Some antidepressants cause weight gain, so maybe we can change them. "

Buhse explains that medical treatment can also help with debilitating exhaustion. "After ruling out depression, we look at how to help the fatigue. Sometimes, we use physical therapy. We can use amantadine, an antiviral that works in 30 to 40 percent of MS patients. We sometimes use Ritalin because it stimulates people with fatigue. "

Ritalin® (methylphenidate), however, can be addictive, so physicians prescribing this medication are careful to keep a close watch on patients taking this drug. Another useful treatment for fatigue is Provigil ® (modafanil). Women with MS need to discuss the potential side effects and benefits of these drugs with their doctors, to determine their most appropriate treatment options.

Dating

Even if a woman with MS feels well enough to take care of her physical appearance, other social issues might occur. Easterling says her patients may feel that they can't date because they have MS. "Many women with MS don't know how to meet someone who will accept them. I tell them to go through old friends to find people to date. If doing internet dating, I advise using caution and bringing a friend along on a first date. "

Before a date, stress-reduction activities such as taking a relaxing bath can help alleviate anxiety. Heat-sensitive individuals may want to use tepid water. Easterling says using strategy in taking medication is important when dating. "A woman with spasticity problems should schedule medications so that they will be most effective on the date. "

When planning a date, women should engage in activities that build confidence and self-esteem. "If you have imbalance issues, don't go bowling on the first date."

Easterling says many women may fear telling their dates that they have MS. "They don't need to disclose anything right away, especially on a first date. Women should discuss MS only when they are comfortable, but remember that if a relationship is worth pursuing, it's worth telling."

Marriage and Sexual Issues

Approximately 75 percent of MS patients are married. Easterling cites studies showing that marriage is associated with better health for people with disabilities.

However, according to the Center for Research on Women with Disabilities, studies reveal that women with disabilities marry at a lower rate than women without disabilities. Women who develop a disability after marriage are also more likely to divorce than men with disabilities.

Sadly, the rate of abuse among women with disabilities is higher than in women without disabilities, although exact numbers vary. This abuse can occur in marriages for reasons that include increased vulnerability, social isolation, and immobility. Shelters for abused women are generally not accessible to women in wheelchairs and cannot offer personal assistance services, causing some women to remain in abusive marriages. Anyone in an abusive relationship should see a professional for assistance. If a woman's safety or wellbeing is at risk, she should immediately call for emergency help.

Photo 6

Despite these statistics, many women with MS enjoy happy marriages. Individuals in a relationship, especially where a disability is involved, should work to promote open communication and mutual understanding.

The physical side of a relationship is important as well, and sexual dysfunction can occur for many individuals - with or without MS - for a variety of reasons. The majority of women with MS have primary sexual dysfunction, so sexuality can be a big issue for these women and their partners.

In MS, primary sexual dysfunction refers to changes in sexual response caused directly by neurologic impairments. Women with MS who are experiencing primary sexual dysfunction can experience one or more of the following symptoms: decreased or absent libido; altered genital sensations; decreased vaginal lubrication; and decreased frequency of orgasm.

In MS, secondary sexual dysfunction refers to changes in sexual response caused indirectly by certain symptoms or complications of MS, such as: bladder or bowel dysfunction; fatigue; spasticity; pain; depression; and anxiety.

Walsh points out that decreased libido can also occur from the low self-esteem that living with MS can cause. A doctor can determine the reason for sexual dysfunction and the way to treat it. "Women need to talk to care providers about sex, as their quality of life can be better when sexuality is a normal outcome of a healthy life. I also encourage women to address this with their partners and find ways to make sexuality a part of their lives again to feel like vital sexual beings. "

Easterling agrees on the importance of women developing good communication skills about sexual issues. "Silence can be misunderstood. Nobody should assume that she knows what her sexual partner is thinking. Women have to discuss their concerns and their needs as a sexual human being. "

She stresses that women should prepare for intimacy. "With MS, intimate moments should be planned, if possible. Soak in a cool or tepid bath first to reduce symptoms. Use the bathroom in advance, and time bladder dysfunction medications carefully to avoid having an accident during intimacy. Do stretching exercises to reduce spasticity during sex. Don't always think about being intimate in the evening when it's natural to be tired. Mornings may be better."

As Women become Older

As women with MS age, they face issues of menopause, just like all women. MS symptoms may slightly worsen while going through menopause. Although hormone-replacement therapy (HRT) helps manage symptoms, 80 percent of menopausal women choose against HRT because of the risks of cancer and stroke. Some women with MS use antidepressant therapy or stress management techniques instead. Others use alternative therapies, such as topical hormone creams found in compounding pharmacies or health food stores, according to Easterling.

Women with MS have no increased risk for breast or cervical cancer, but can be more at risk for osteoporosis because of steroid use and lack of weight-bearing exercise. "Menopause is a bigger issue for women with MS. Walking prevents or minimizes osteoporosis, so women who use wheelchairs are more at risk. For women who can exercise, even walking leisurely for one-half hour each day will be beneficial. They don't have to run or lift weights, but they need to exercise."

Although physicians should routinely screen all women aged 65 and older for osteoporosis, Faber says women with MS should begin having bone- density scans earlier due to increased risk factors. In addition to lack of exercise, significant steroid use and menopausal state, other risk factors for osteoporosis include: small body frame; family history of osteoporosis; past or present smoking; caucasian; concurrent thyroid disease; and low calcium intake.

Taking a Proactive Approach

Photo 7"MS has a great impact on dating, family life, working, and whether to have children, " says Buhse. "I try to empower patients to take as much control over the disease as they can by taking medications regularly, exercising, and talking about their symptoms to other people. A lot of patients say,'I have MS, but MS does not have me.'"

Dr. Burks emphasizes that women today can take a proactive approach to minimizing the effects of MS. Some of the best ways to do so include:

  • Positive mental attitude
  • Proper nutrition and weight control
  • Medical management of MS and its symptoms
  • Exercise and staying active
  • Conserving energy by pacing activities
  • Stress management
  • Asking for help when needed
  • Cognitive rehabilitation, if needed
  • Accommodations at work and at home

Even for women without MS, the demands can be great as they balance career, family, and relationships. For women with MS, this may mean even greater challenges. But now that medical treatments are available to slow the effects of MS, and with the help of family, friends, and outside services such as MSAA, these women are making strides in their careers while enjoying a rewarding family life. Although things may not always be easy, many women with MS are able to take the challenge and continue to fulfill their professional and personal hopes and dreams.

Helpful Resources

Center for Research on Women with Disabilities

www.bcm.tmc.edu/crowd or (800) 442-7693

Chronic Illness Coach

www.cicoach.com or (617) 969-1930

Dating 4 Disabled

www.dating4disabled.com or (201) 984-9230

Dress for Success

www.dressforsuccess.org or (212) 532-1922 (Provides professional attire, support, and career development to disadvantaged women)

National Domestic Violence Hotline

www.ndvh.org or (800) 799-SAFE (7233)

National Women's Health Information Center

http://www.womenshealth.gov/ or (800) 994-9662

Society for Women's Health Research

www.womenshealthresearch.org or (202) 223-8224

Some Things Only a Woman Can Do

www.womancando.org or (877) 332-2636

The Family Village

www.familyvillage.wisc.edu

For additional resources, please speak with an MSAA Helpline Consultant at (800) 532-7667.

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Last Updated on Monday, 25 March 2013 11:27