4 Things you need to know about fragile x syndrome

Fragile X Syndrome

4 Things you need to know about fragile x syndrome

In honor of Fragile X Awareness Month, Team Select and The Unforgotten Families, A Driver of Change, is proud to recognize this important time of the year and spread awareness for families and individuals affected by Fragile X syndrome.

What is Fragile X?

Put simply, Fragile X syndrome is a genetic condition that causes intellectual disability.

“Fragile X syndrome is characterized by moderate intellectual disability in affected males and mild intellectual disability in affected females. Distinctive physical features are sometimes present in affected males including a large head, long face, prominent forehead and chin, protruding ears, loose joints and large testes, but these features develop over time and may not be obvious until puberty. Motor and language delays are usually present but also become more apparent over time. Behavioral abnormalities including autistic behaviors are common.” – NORD

Symptoms of Fragile X syndrome in your child can include but are not limited to:

  • Large ears / head
  • Flat feet
  • Difficulty reaching milestones such as speaking, sitting, walking, and crawling
  • Anxiety
  • Seizures
  • Behavioral complications / problems

“Boys are usually diagnosed around 35 to 37 months old, and girls around 42 months. You might start to notice symptoms in your child as early as 12 months.” – Cleveland Clinic

If left undiagnosed unacknowledged, individuals with Fragile X may experience tremors as adults and not know why, along with possible changes in behavior at various points in their lifetime.

Caring for a child with Fragile X 

When caring for a child or individual with this genetic condition, it is important to have a support system of friends, family members, healthcare professionals, and families in a similar situation to help guide you and your loved one whenever needed. Individuals often require additional patience and a consistent routine to be their happiest and most fulfilled self.

It is important to note that each individual’s diagnosis is unique and will still require an individual care plan that might differ from someone else’s.

Individuals with Fragile X may require:

  • Occupational Therapy
  • Physical Therapy
  • Speech Therapy
  • In-home Caretaker
  • Medication Management
  • Special Education Courses in school

The Unforgotten Families, A Driver of Change powered by Team Select is an advocacy campaign proud to offer communities around the nation, a place of support, education, and advocacy. Medically fragile families or those affected by Fragile X syndrome are encouraged to ‘Become an Advocate’ and help The Unforgotten Families bring change to families nationwide.

The Unforgotten Families advocates and provides resources for medically fragile and complex families of all diagnoses.

Additional resources of support for Fragile X families

Home Care for Fragile X

Team Select Home Care is proud to offer a variety of at home care services to fit each family’s unique needs, including those with Fragile X syndrome. Team Select offers:

  • Home Health Care for individuals of all ages
  • Long-Term Adult and Pediatric Care
  • Mobile Outpatient Therapy
  • Mobile Physician Services for every member of the family

With a family-centered approach, our caring team is with you every step of the way.

Learn more about Team Select by visiting, www.tshc.com.

Join Team Select and The Unforgotten Families this month in spreading awareness around those living with Fragile X and help advocate for change! To learn more about this annual celebration please visit www.fragilex.org.

References

https://www.webmd.com/children/what-is-fragile-x-syndrome

https://my.clevelandclinic.org/health/diseases/5476-fragile-x-syndrome#:~:text=Boys%20are%20usually%20diagnosed%20around,as%20early%20as%2012%20months.

https://www.chp.edu/-/media/chp/departments-and-services/brain/documents/neurology-documents/fragile-x-center-documents/guidelines-of-care-in-fragile-x.pdf https://medschool.cuanschutz.edu/fragilex/fragile-x-disorders/caregivers-of-those-with-fragile-x-syndrome