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Beyond the Birthmark: Going Past the Surface with Sturge-Weber

Sturge-Weber syndrome is a congenital disorder affecting the healthy development of certain blood vessels that supply the brain, skin, and eyes. It is characterized by a port wine birthmark on the face, increased pressure in the eye, and neurological involvement (e.g. leptomeningeal angioma). These can result in seizure activity as well as stroke-like episodes causing temporary weakness on one side of the body, vision deficits, migraine headaches, and loss of consciousness.  Symptom severity vary between individuals with Sturge-Weber syndrome, and some may not exhibit all three symptoms.   

To address these symptoms, individuals with Sturge-Weber syndrome can receive vascular specific laser treatment (as frequent as every 6-8 weeks) to decrease the size and lighten the color of the port wine birthmark. They may receive antiepileptic medications to address seizure activity as well as medications specific to addressing glaucoma. Although there is no cure, children with Sturge-Weber syndrome can benefit from physical and occupational therapy to address muscle imbalances seen on the affected side of the body, facilitate engagement in school activities, and promote their functional independence.  

For more information, please visit: https://medlineplus.gov/genetics/condition/sturge-weber-syndrome/   

World Multiple Sclerosis Day

Multiple Sclerosis (MS) is an autoimmune disease that causes a breakdown in communication between the brain and the nervous system. Its symptoms include vision loss, pain, fatigue, and coordination challenges.

This condition has no cure, but with rehabilitation and other treatments it is possible to improve the quality of life of people who have it, changing the course of the disease and controlling its symptoms.

Why is it commemorated?

On the World Multiple Sclerosis Day, a call is made for people living with this condition, to share their stories and raise awareness among the general population. An attempt is also made to break down the social barriers that make people with MS feel lonely and socially isolated. It is an opportunity to promote better services and support networks.

TeletonUSA and MS

At TeletonUSA Foundation we have specialists and equipment that can benefit people living with MS. Our services are available for all children, in the traditional TeletonUSA model.

Don’t Wait, Vaccinate at CRIT

In order to better serve our community, we are pleased to announce that Children’s Rehabilitation Institute TeletonUSA will become a COVID-19 Vaccination Center.

Professionals from the San Antonio Metropolitan Health District (Metro Health), will be administering the Pfizer vaccine on the following dates:

  • First dose: Wednesday, May 26, 2021
  • Second dose: Wednesday, June 23, 2021

Requirements:

  • You must be over 12 years of age
  • You must arrive on time for your appointment
  • You must fill out the registration form, available here

If you have questions, or need more information, call (210) 257-6260 or send an email to contactus@critusa.org.

About OI: Types, Symptoms, and Treatment

Osteogenesis Imperfecta (OI), also known as brittle bone disease, is a genetic disorder affecting the healthy development of the skeletal system. Children with this condition have a genetic defect that affects their ability to make collagen, resulting in collagen deficiency or having collagen that doesn’t function properly. As a result, their bones are not as strong as a typically developing child. 

Symptoms can include:

  • Bones that break easily
  • Bone pains
  • Bone deformities (such as scoliosis development or having bowlegs)
  • Shorter stature
  • A triangular-shaped face

Though there are 15 different types of OI, the most common types are types I-IV, which vary in life expectancy and functional prognosis. While there is no cure, children with OI can benefit from physical and occupational therapy to prevent fractures, manage them when they occur, strengthen muscles to promote overall mobility and functional independence and incorporate standing programs for bone/joint integrity. 

For more information, please visit https://kidshealth.org/en/parents/osteogenesis-imperfecta.html