This is my 8 year old daughter, Isabel. She has a port wine stain on the right side of her face, and has a medical condition called Sturge Weber Syndrome.
While at Walmart yesterday, a lady walks by us, stops, stares at my daughter, and says "Oh my God. What happened to her face?" IN FRONT of my daughter. Isabel looked at me, while I said "Oh my Goodness. What happened to your manners?" and I walked away!!
Needless to say, I had a long talk with my daughter yesterday. I think that she felt bad, but didn't cry.
If you see anyone, especially a child, with something that isn't "normal", please don't say anything.
This was her at birth. So you can tell how much it's lightened with the laser treatments.
Quoting KW1280:
*taking my ear rings off * point her out to me.* Seriously when people say stupid things i go there with them then or ignore them
Usually I do ignore people, unless I know that my daughter hears it.
You can't fix stupid. I'm so sorry this happened to your beautiful daughter.
aww she's a cutie... and I agree "you can't fix stupid"..grrrr some people are so off ya wanna smack em straight don't ya? HUGS
Causes, incidence, and risk factors
The cause of Sturge-Weber is unknown. It is not thought to be passed down (inherited) through families.
Symptoms
Port-wine stain (more common on the face than the body)
Seizures
Paralysis or weakness on one side
Learning disabilities
Signs and tests
Glaucoma may be one sign of the condition.
Tests may include:
CT scan
MRI scan
X-rays
Treatment
Treatment is based on the patient's signs and symptoms, and may include:
Anticonvulsant medicines for seizures
Eye drops or surgery to treat glaucoma
Laser therapy for port-wine stains
Physical therapy for paralysis or weakness
Possible brain surgery to prevent seizures
Expectations (prognosis)
Most cases of Sturge-Weber are not life-threatening. The patient's quality of life depends on how well the symptoms (such as seizures) can be prevented or treated.
Patients will need to visit an ophthalmologist at least once a year to treat glaucoma. They also will need to see a neurologist to treat seizures and other nervous system symptoms.
Complications
Abnormal blood vessel growth in the skull
Continued growth of the port-wine stain
Developmental delays
Emotional and behavioral problems
Glaucoma, which may lead to blindness
Paralysis
Seizures
Calling your health care provider
The health care provider should check all birthmarks, including a port-wine stain. Seizures, vision problems, paralysis, and changes in alertness or mental state may mean the coverings of the brain are involved. These symptoms should be evaluated right away.
Prevention
There is no known prevention.
References
Haslam RHA. Neurocutaneous syndromes. In: Kliegman RM, Behrman RE, Jenson HB, Stanton BF, eds. Nelson Textbook of Pediatrics. 18th ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap 596.
Review Date: 11/14/2011.
Reviewed by: Chad Haldeman-Englert, MD, Wake Forest School of Medicine, Department of Pediatrics, Section on Medical Genetics, Winston-Salem, NC. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
Quoting sahlady:
What is sturge syndrome?
Lets Send Love and Prayers To All Those Families in Oklahoma
- grandmalove2012
on Aug. 11, 2012 at 12:56 PM