PPMD recently hosted a webinar on genitourinary (GU) concerns (or the reproductive organs and the urinary system health) for individuals with Duchenne. Rachel Schrader, VP of Clinical Care and Education, spoke with a panel of experts on what we currently know and what more we need to learn. The panel consisted of three Urologists:

• Chris Cooper, MD (University of Iowa)
• Angelena Edwards, MD (University of Iowa)
• Dan Wood, PhD, MBBS (University of Colorado)

Watch: Connect With the Experts – Genitourinary Health

Takeaways from Dr. Cooper

• A study at the University of Iowa showed that many children with Duchenne and Becker muscular dystrophy have a urological diagnosis documented in their medical records, although not all are being treated for these by a urologist.
• The most common issues documented in the medical records included urinary frequency, hesitancy, incontinence, nocturia (having to pee at night), weak stream, and difficulties voiding
• Kidney stones were seen more frequently in older people with Duchenne and Becker.-A survey completed by adolescents and adults with Duchenne showed that the most common symptom reported was urgency and hesitancy of stream.
• Although older patients reported symptoms, only a small number (16% of participants) reported those symptoms caused dissatisfaction, meaning that for a majority of people, these issues did not interfere with their quality of life.

Takeaways from Dr. Edwards

• A study at the University of Iowa found that more children with Duchenne and Becker muscular dystrophy reported GI/GU (gastrointestinal/genitourinary) issues compared to children without Duchenne/Becker.
• The most common symptoms seen in younger children were overactivity and small bladder capacity (how much the bladder can hold). The medication oxybutynin improved these symptoms in some patients. 
• Urodynamic Studies may be recommended to help identify problems with the urinary tract. These tests help determine how much your bladder can hold and how well it can empty.
• The gastrointestinal system may play a role in urologic issues as well. Seeing a urologist can help identify causes and treatment options.
• A study in rats showed that dystrophin expression was found in smooth bladder muscle; however, the bladder did not weaken over time. This means there is still more to learn about how Duchenne affects the urinary system.

Takeaways from Dr. Wood

• Transition to adult care is important to think about and discuss with your medical team. It may be difficult to find an adult specialist, so talking about this early can help.
• Adults with Duchenne and Becker should watch for symptoms including changes in bladder function, incontinence, urinary tract infections (UTI), and blood in the urine. If any of these occur, you should seek a urology referral.
• There are several options for treating urologic issues. Be sure to talk to your doctor about what these are and help decide the best option for you.

Additional Takeaways & Resources

While we learned a lot about how the urinary system works, how Duchenne may play a role, and different treatment options, there is still more research that needs to be done. PPMD is committed to continuing the conversation in order to improve care in every area. When in doubt, if you/your child is experiencing urinary symptoms that are concerning to you, let your primary care provider or neuromuscular specialist know so they can connect you with the appropriate specialists for treatment options.

Remember:

• If your child is having difficulties with potty training or bedwetting, it’s important to get an appointment with a urologist and/or behavior specialist. The urologist may be able to determine if the issue is due to your child’s urinary system, or if a referral to a behavior specialist would be beneficial. 
• If you notice any changes from your child’s urinary baseline, ask your neuromuscular specialists or primary care provider for a urology referral. 
• A urologist can talk to you about different treatment options, including different external catheters.
• Sometimes, urinary issues are caused by constipation. Be sure to let your doctor know if your child is experiencing any GI problems, or if you are unsure if GI problems could be contributing to urinary complaints.

If you have more questions, please reach out to PPMD’s Care team at careteam@parentprojectmd.org.