Livesmart cmt am

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If you or a member of your family needs a physician or information about other St. Peter’s services call the St. Peter’s Physician Referral & Information Line at 525-2CARE (525-2227). D o you ever feel a sudden, uncontrollable urge to “go”? Or, lost urine involuntarily while coughing, laughing or sneezing? If so, you’re not alone: one in five adults over age 40 experiences bladder control problems. Incontinence is not a disease, but a medical condition where an individual can suffer the loss of bladder or bowel movement. Many people are uncomfortable discussing it, so about half who suffer never seek treatment. According to the Agency for Health Care Policy and Research, more than 13 million Americans have bladder control problems including incontinence, overactive bladder and/or recurrent symptoms of urgency and frequency. About 85 percent are women. Urinary incontinence can affect day-to-day activities and limit enjoyment of life. Some symptoms include leaking urine; strong, sudden urge to urinate; frequent urination; inability to control urination; involuntary urination when coughing, laughing, sneezing, running or performing other physical activity; and waking up more than twice a night to urinate. Incontinence can be aggravated by constipation, pelvic muscle weakness, hormone imbalance and other common problems, or can occur as a result of pregnancy or childbirth. With proper diagnosis, most people affected can be cured or show good improvement. Proper diagnosis and treatment can help patients regain their active lifestyles and peace of mind. Clinicians can help evaluate the factors that may affect bladder control, including diet and medications (muscle relaxers, sedatives, antihistamines, antidepressants and calcium channel blockers), which can affect the bladder muscle and bladder outlet muscle. At the Seton Health Incontinence Treatment Center, individualized treatment plans offer patients the most effective and up-to-date therapies and treatment options, including diet management, bladder retraining exercises, medications, pessary fittings, biofeedback, electrical stimulation and surgical interventions. The center has been recognized by the National Association for Continence as a Continence Care Champion. For more information or to make an appointment, please call 518-268-5380. FREE SCREENING EVENT Free Bladder Screenings for the Community Monday, Aug. 26 10 a.m. to noon Seton Health Incontinence Treatment Center 147 Hoosick Street , Troy The screenings are open to the public. For more information or to schedule an appointment, please call 518-268-5380. By Cynthia Monaghan, RNC, MS, FNP Director, Incontinence and Wound Services Seton Health Incontinence Treatment Center There is help for Incontinence Get LiveSmart updates at www.facebook.com/CRLiveSmart Health Beat W hen I see young people smoking, I want to walk up to them and say, “Hey, do you know you’re raising your risk of bladder cancer?” That’s right. The risk of bladder cancer, the 10th most commonly diagnosed cancer in this country, gets lost in concern over the link between smoking and lung cancer. However, it’s estimated 50 percent of all men diagnosed with bladder cancer and 30 percent of women are linked to smoking. It’s estimated there will be 72,570 new cases of bladder cancer this year with 15,210 deaths. For every woman diagnosed, four men are diagnosed with the disease. The most common symptom of bladder cancer is blood in the urine, but it’s not always visible, so testing the urine is the only way to detect it. Some types of bladder cancer may increase the frequency of urination, inability to hold the urine for any length of time or a burning sensation while passing urine. For more info on bladder cancer check out http://www.cancer.gov/ cancertopics/types/bladder Benita Zahn, Anchor/Health Reporter, WNYT 715 North Pearl Street, Albany, NY 12204 c: 518-369-2703, o: 528-207-4820; twitter: @BenitaZahn https://www.facebook.com/benitazahn?ref=ts&fref=ts LiveSmart supports the Classroom Enrichment Fund at The Community Foundation for the Capital Region and is made possible by donations from St. Peter’s Health Care Services and Price Chopper, with promotional services provided by the Times Union and WNYT/NewsChannel 13. LiveSmart is compiled by Helen Susan Edelman, Project Director. This project ensures 70,000 students and teachers in the Capital Region have equal access to news content during the school year. W omen don’t want to talk about it, but many are mortified by leaking urine involuntarily when they sneeze. There are numerous reasons why this might happen. The most common cause is stress incontinence, often related to being pregnant or giving birth naturally. Another risk factor for stress incontinence is obesity. There is also a chance that bladder control problems – often undiagnosed -- can underlie the condition. Symptoms of bladder control problems to watch for include frequent urination, waking up at night to urinate, difficulty urinating and the feeling of having to urinate, but being unable. A urinary tract infection, signaled by bloody urine, pain or discomfort when urinating, frequent urination and only urinating a tiny amount also can be the source (and usually can be managed with antibiotics). A current pregnancy, during which pressure is exerted on the bladder by the ever-expanding uterus, can be marked by urine leakage. No matter why you are experiencing urine leakage, a doctor should be consulted. The condition can be embarrassing – but it’s nothing to sneeze at. — Helen Susan Edelman, LiveSmart Project Director, [email protected] www.facebook.com/crlivesmart Fit to Learn, Fed to Learn This page is presented as a community service for the Classroom Enrichment Fund Get free answers to questions about nutrition and healthy eating. Ask Price Chopper’s Senior Nutritionist, Ellie Wilson, M.S., R.D., C.D.N, how your favorite foods can fit your lifestyle and improve the way you feel, look and eat. To email Ellie, visit www. pricechopper.com and click the Health and Wellness link, or call 1-800-666-7667, and choose option 2. We can address general nutrition concerns. Please ask your doctor for a referral to a registered dietitian if you have specific questions about diet as it relates to a medical condition. I nterstitial cystitis is a condition that causes individuals to have significant pelvic pain issues. It is known by several names, including painful bladder syndrome and hyperactive bladder syndrome, and it is a condition that results in “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes.” (2009 new American IC/BPS Guidelines). I wrote about this topic for LiveSmart first in 2011, after reading about it in a professional publication for registered dietitians. I have not had any patients struggling with this issue, but I remember being very impressed with the work one RD had done to study and develop resources for registered dietitians to assist those suffering with IC. Her name is Julie Beyer, and she struggles with this condition herself. Returning to this topic, I was very happy to find research has continued and built upon the work she has done, and the resources have also grown. There is a wonderful support website for those who are challenged with IC, and the web link is http://www.ic-network.com. There you can find information on nutrition and diet and a link to Julie’s website, as well as a link to a collaborative diet guide developed by two RDs and some others who have worked toward the evidence base for the diet-pain link for IC patients. A new foods list and a number of cookbooks and apps also are at this site, as well as other resources for information on medical management. The guides and books available now to assist those navigating this issue and trying to assess their particular trigger foods are great shortcuts, but anyone struggling with IC should request a referral to a registered dietitian. Layering food restrictions over our own likes and dislikes, budget, time and interest in preparing food, as well as other health issues we may have that have a diet component, can set up deficiencies and unintended stress and costs. The RD can help you prioritize, suggest products that will assist and ensure you are meeting needs for your whole health. In the Capital Region, Price Chopper community dietitians are available in Bethlehem and Niskayuna -- we would be glad to help you feel better. By Ellie Wilson, MS, RD Senior Nutritionist, Price Chopper Supermarkets Interstitial Cystitis and the Food-Pain Link Normal Bladder Bladder Inflamed by Interstitial Cystitis S igns and symptoms of Charcot-Marie-Tooth Disease, a neurodegenerative disorder, include muscle weakness in legs/feet/arm/hands, loss of muscle bulk in lower limbs, loss of balance, sensory loss in feet, foot drop (inability to lift feet), or foot deformities (high arch or flat feet). Participants needed for study The Inherited Neuropathies Consortium of the Rare Diseases Clinical Research Network is conducting research about symptoms and day-to-day issues important to adults with CMT. Individuals affected are invited to participate in research that will develop a nationwide registry. You will be emailed when a study is recruiting/when there are updates to research. To register in confidence, go to http://rarediseasesnetwork.epi.usf. edu/INC/register/ Now enrolling patients: 6601: Natural History Evaluation of Charcot-Marie-Tooth Disease: Participants will be re-evaluated annually. 6602: Genetics of CMT: Finding genetic modifiers for CMT1A and new genes that cause CMT2. 6603: Development of CMT Pedes Scale for Children with CMT: The purpose is to develop and test methods to measure impairment of children, test this scale to ensure that it is an effective measurement, that the children tolerate it well, that different investigators using this method obtain similar results and that changes over time with the scale allow measurement of progression of CMT in children. Go to http://rarediseasesnetwork.epi.usf.edu for complete information about the studies. Learn more: www.cmtausa.org September is CHARCOT–MARIE–TOOTH (CMT) AWARENESS MONTH By Melinda Lang CMT Support Action Group of Upstate NY – 518-783-7313 The typical CMT-affected foot has a high arch and “hammer” toes

description

Charcot-Marie-Tooth signs and symptoms and research registry

Transcript of Livesmart cmt am

Page 1: Livesmart cmt am

If you or a member of your family needs a physician or information about other St. Peter’s services call the St. Peter’s Physician Referral & Information Line at 525-2CARE (525-2227).

Do you ever feel a sudden, uncontrollable urge to “go”? Or, lost urine involuntarily while coughing, laughing or sneezing? If

so, you’re not alone: one in five adults over age 40 experiences bladder control problems.

Incontinence is not a disease, but a medical condition where an individual can suffer the loss of bladder or bowel movement. Many people are uncomfortable discussing it, so about half who suffer never seek treatment.

According to the Agency for Health Care Policy and Research, more than 13 million Americans have bladder control problems including incontinence, overactive bladder and/or recurrent symptoms of urgency and frequency. About 85 percent are women.

Urinary incontinence can affect day-to-day activities and limit enjoyment of life. Some symptoms include leaking urine; strong, sudden urge to urinate; frequent urination; inability to control urination; involuntary urination when coughing, laughing, sneezing, running or performing other physical activity; and waking up more than twice a night to urinate.

Incontinence can be aggravated by constipation, pelvic muscle weakness, hormone imbalance and other common problems, or can occur as a result of pregnancy or childbirth.

With proper diagnosis, most people affected can be cured or show good improvement. Proper diagnosis and treatment can help patients regain their active lifestyles and peace of mind.

Clinicians can help evaluate the factors that may affect bladder control, including diet and medications (muscle relaxers, sedatives,

antihistamines, antidepressants and calcium channel blockers), which can affect the bladder muscle and bladder outlet muscle.

At the Seton Health Incontinence Treatment Center, individualized treatment plans offer patients the most effective and up-to-date therapies and treatment options, including diet management, bladder retraining exercises, medications, pessary fittings, biofeedback, electrical stimulation and surgical interventions. The center has been recognized by the National Association for Continence as a Continence Care Champion. For more information or to make an appointment, please call 518-268-5380.

FREE SCREENING EVENTFree Bladder Screenings

for the Community Monday, Aug. 26 • 10 a.m. to noon

Seton Health Incontinence Treatment Center

147 Hoosick Street , Troy

The screenings are open to the public. For more information or to schedule an appointment, please call 518-268-5380.

By Cynthia Monaghan, RNC, MS, FNPDirector, Incontinence and Wound Services

Seton Health Incontinence Treatment Center

There is help for

Incontinence

Get LiveSmart updates at www.facebook.com/CRLiveSmart

Health Beat

When I see young people smoking, I want to walk up to them and say, “Hey,

do you know you’re raising your risk of bladder cancer?” That’s right. The risk of bladder cancer, the 10th most commonly diagnosed cancer in this country, gets lost in concern over the link between smoking and lung cancer. However, it’s estimated 50 percent of all men diagnosed with bladder cancer and 30 percent of women are linked to smoking. It’s estimated there will be 72,570 new cases of bladder cancer this year with 15,210 deaths. For every woman diagnosed, four men are diagnosed with the disease. The most common symptom of bladder cancer is blood in the urine, but it’s not always visible, so testing the urine is the only way to detect it. Some types of bladder cancer may increase the frequency of urination, inability to hold the urine for any length of time or a burning sensation while passing urine. For more info on bladder cancer check out http://www.cancer.gov/cancertopics/types/bladder

— Benita Zahn, Anchor/Health Reporter, WNYT 715 North Pearl Street, Albany, NY 12204 c: 518-369-2703, o: 528-207-4820; twitter: @BenitaZahn https://www.facebook.com/benitazahn?ref=ts&fref=ts

LiveSmart supports the Classroom Enrichment Fund at The Community Foundation for the Capital Region and is made possible by donations from St. Peter’s Health Care Services and Price Chopper, with promotional services provided by the Times Union and WNYT/NewsChannel 13. LiveSmart is compiled by Helen Susan Edelman, Project Director. This project ensures 70,000 students and teachers in the Capital Region have equal access to news content during the school year.

Women don’t want to talk about it, but many are mortified by leaking urine

involuntarily when they sneeze. There are numerous reasons why this might happen. The most common cause is stress incontinence, often related to being pregnant or giving birth naturally. Another risk factor for stress incontinence is obesity.

There is also a chance that bladder control problems – often undiagnosed -- can underlie the condition. Symptoms of bladder control problems to watch for include frequent urination, waking up at night to urinate, difficulty urinating and the feeling of having to urinate, but being unable. A urinary tract infection, signaled by bloody urine, pain or discomfort when urinating, frequent urination and only urinating a tiny amount also can be the source (and usually can be managed with antibiotics). A current pregnancy, during which pressure is exerted on the bladder by the ever-expanding uterus, can be marked by urine leakage. No matter why you are experiencing urine leakage, a doctor should be consulted. The condition can be embarrassing – but it’s nothing to sneeze at.

— Helen Susan Edelman, LiveSmart Project Director, [email protected] www.facebook.com/crlivesmart

Fit to Learn, Fed to LearnThis page is presented as a community service for the Classroom Enrichment Fund

Get free answers to questions about nutrition and healthy eating. Ask Price Chopper’s Senior Nutritionist, Ellie Wilson, M.S., R.D., C.D.N, how your favorite foods can fit your lifestyle and improve the way you feel, look and eat. To email Ellie, visit www. pricechopper.com and click the Health and Wellness link, or call 1-800-666-7667, and choose option 2. We can address general nutrition concerns. Please ask your doctor for a referral to a registered dietitian if you have specific questions about diet as it relates to a medical condition.

Interstitial cystitis is a condition that causes individuals to have significant pelvic pain issues. It is known by several names, including

painful bladder syndrome and hyperactive bladder syndrome, and it is a condition that results in “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes.” (2009 new American IC/BPS Guidelines).

I wrote about this topic for LiveSmart first in 2011, after reading about it in a professional publication for registered dietitians. I have not had any patients struggling with this issue, but I remember being very impressed with the work one RD had done to study and develop resources for registered dietitians to assist those suffering with IC. Her name is Julie Beyer, and she struggles with this condition herself. Returning to this topic, I was very happy to find research has continued and built upon the work she has done, and the resources have also grown.

There is a wonderful support website for those who are challenged with IC, and the web link is http://www.ic-network.com. There you can find information on nutrition and diet and a link to Julie’s website, as well as a link to a collaborative diet guide developed by two RDs and some others who have worked toward the evidence base for

the diet-pain link for IC patients. A new foods list and a number of cookbooks and apps also are at this site, as well as other resources for information on medical management.

The guides and books available now to assist those navigating this issue and trying to assess their particular trigger foods are great shortcuts, but anyone struggling with IC should request a referral to a registered dietitian. Layering food restrictions over our own likes and dislikes, budget, time and interest in preparing food, as well as other health issues we may have that have a diet component, can set up deficiencies and unintended stress and costs. The RD can help you prioritize, suggest products that will assist and ensure you are meeting needs for your whole health. In the Capital Region, Price Chopper community dietitians are available in Bethlehem and Niskayuna -- we would be glad to help you feel better.

By Ellie Wilson, MS, RD Senior Nutritionist,

Price Chopper Supermarkets

Interstitial Cystitis

and the

Food-Pain Link

NormalBladder

Bladder Inflamed by Interstitial

Cystitis

Signs and symptoms of Charcot-Marie-Tooth Disease, a neurodegenerative disorder, include muscle weakness in legs/feet/arm/hands, loss of muscle

bulk in lower limbs, loss of balance, sensory loss in feet, foot drop (inability to lift feet), or foot deformities (high arch or flat feet).

Participants needed for study

The Inherited Neuropathies Consortium of the Rare Diseases Clinical Research Network is conducting research about symptoms and day-to-day issues important to adults with CMT. Individuals affected are invited to participate in research that will develop a nationwide registry. You will be emailed when a study is recruiting/when there are updates to research. To register in confidence, go to http://rarediseasesnetwork.epi.usf.edu/INC/register/

Now enrolling patients:

6601: Natural History Evaluation of Charcot-Marie-Tooth Disease: Participants will be re-evaluated annually.

6602: Genetics of CMT: Finding genetic modifiers for CMT1A and new genes that cause CMT2.

6603: Development of CMT Pedes Scale for Children with CMT: The purpose is to develop and test methods to measure impairment of children, test this scale to ensure that it is an effective measurement, that the children tolerate it well, that different investigators using this method obtain similar results and that changes over time with the scale allow measurement of progression of CMT in children.

Go to http://rarediseasesnetwork.epi.usf.edu for complete information about the studies.

Learn more: www.cmtausa.org

September is CHARCOT–MARIE–TOOTH (CMT)

AWARENESS MONTHBy Melinda Lang

CMT Support Action Group of Upstate NY – 518-783-7313

The typical CMT-affected foot has a high arch and

“hammer” toes

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