Signs and Symptoms of Becker
WHAT CAUSES THE SYMPTOMS OF BECKER?
Becker is caused by a change in a gene called DMD, which provides the instructions to make a protein called dystrophin. Dystrophin acts as the glue that holds muscles together and the “shock absorber” that allows muscles to contract and relax without being damaged. Dystrophin is in every single muscle cell in our bodies. In individuals with Becker, some dystrophin is made, but not always in the normal form or amount. Without a sufficient amount of functioning dystrophin, muscles are not able to function or repair themselves the way they should. This causes weakness over time.
SIGNS OF BECKER
The diagnosis time for Becker muscular dystrophy can vary greatly as the symptoms of Becker can begin in childhood, the teenage years, or even later. Becker progresses differently for every person.
If you or any of your healthcare providers notice one or more of the symptoms listed below, or if concerns arise regarding delayed development in gross motor skills, fine motor skills, or speech, a creatine kinase (CK, sometimes called creatine phosphokinase, or CPK) level should be checked.
SYMPTOMS OF BECKER CAN INCLUDE:
- Difficulties with walking, running, or climbing stairs
- Frequent falls
- Muscle cramps
- Muscle pain with physical activity
- Heart abnormalities, including issues with rhythm and pumping
- Learning difficulties
- Speech delays
PROGRESSION
Becker muscular dystrophy is considered a progressive disease, meaning that the muscles become weaker over time. However, progression can look very different from one person to another. Some people with Becker may need a mobility device by their 20s, while others are able to keep walking, sometimes with a cane, for many years. Even siblings with the same variant may have a different progression of symptoms.
Regular visits with your neuromuscular team will help you to monitor the progression of this disease and how it can best be treated along the way. Even if skeletal muscle symptoms seem mild, it’s critical everyone with Becker be evaluated by a cardiologist at least annually as heart disease can develop faster than muscle weakness. If possible, you should be seen by a comprehensive care team at least annually at a Certified Duchenne Care Center.
HOW DO I TALK TO MY DOCTOR ABOUT MY CONCERNS?
The following tools can help you or your healthcare provider determine if the symptoms you have noticed require additional testing and can guide conversations to get the most optimal care.
- For Parents: The American Academy of Pediatrics has developed the Physical Developmental Delays: What To Look For tool to help parents evaluate their child’s physical development, and possible delays.
- For Adult Patients: Beckermusculardystrophy.com developed a guide designed to support individuals with Becker in starting discussions with their care team.
- For Medical Providers: ChildMuscleWeakness.org is a site for professionals, helping them to evaluate their patients for delays and possible diagnoses.
American Academy of Pediatrics (AAP) – Physical Developmental Delays: What To Look For tool
Parents are usually the first to recognize that their child’s walking/crawling/running “isn’t quite right” or is “not quite the same as their first child/friend’s child.” Often parents bring these concerns to the attention of their child’s doctor or other healthcare provider only to find that their clinician does not see the difference that the parents noticed.
The American Academy of Pediatrics (AAP) recognizes that parents are the best people to listen to when it comes to developmental concerns. In order to address these concerns, the AAP has developed a tool, with input from Parent Project Muscular Dystrophy, to help parents determine whether anything needs attention at this time and how to follow up on their child’s progress. Please use this tool if you are concerned about your child’s physical developmental delays.
ChildMuscleWeakness.org
Primary care providers (pediatricians, nurse practitioners, family practice providers, etc.) care for hundreds of children and families within their practice, and there are hundreds of different diagnoses that they are presented with every week. In order to help these providers more easily recognize neuromuscular disorders and to enable a quicker and earlier diagnosis, PPMD worked to develop ChildMuscleWeakness.org as a resource for professionals to support early identification of muscle weakness, including a motor surveillance tool and downloadable screening and referral algorithm. Please be sure that your primary care providers are aware of this tool.
How can I be sure if I/my child has Becker?
Having an accurate, timely diagnosis is a critical aspect of care. There are reliable tests to help confirm a diagnosis of a person with Becker. Learn more about how Becker is diagnosed.
If you have received a diagnosis of Becker or have other questions, please reach out to PPMD’s Care Team careteam@parentprojectmd.org or schedule a 1:1 meeting with members of our team here.
