** Courtesy of the Progeria Research Foundation and the families of the children with
Progeria.
***
Pictures were taken at Sunshine Foundation's Reunion.
HGPS (Hutchinson-Gilford Progeria Sydrome) is an infrequent but terminal illness that affects 1 out of 4 million children
throughout the world. Cases have been reported in Algeria, Australia, Austria, Canada, China, England, France, Germany,
Mexico, Puerto Rico, South Africa, South America, Switzerland, Turkey, the United States, Venezuela and Vietnam. Currently,
there's an estimated 40 individuals living with this terminal ailment.
HGPS was first described by Jonathan Hutchinson, an English doctor in 1886 and shortly after by Hastings Gilford.
The "old man appearance" was later termed Hutchinson-Gilford Progeria. Since Dr. Hutchinson's first sighting of a 3 year
old male patient with an unusual old man appearance, a little over a 100 cases have been reported.
Generic characteristics of HGPS appear a year or two after birth and include an old aged appearance, sudden loss of hair,
prominent scalp veins, beaked nose, stunted growth, craniofacial disproportion, soft bones, joint stiffness, and loss of
subcutaneous fat. Many of the problems associated with HGP include: mycardial infarction, atheriosclerosis, alopecia (loss
of hair), hip dislocation, osteoporsis, cerebrovascular complication, and etc.
Although the body is deprived like that of a 60 or 70 year old, their mental capacity is unaffected. They have aspirations
just like any other children, however the illness prevents them from some of the activities that normal kids can take part
in. Being physically active can be an obstacle, but it doesn't discourage them. The children with HGP have been described to
be wonderfully driven children, who are full of life and hope. Although their "old man appearance" draws much attention from
kids their age-- they are proud of who they are not ashamed of their physical appearance.
The number of children diagnosed with HGPS dwindles every year due to insufficient research. The cause of death is usually
due to atherosclerosis and myocardial infarction.
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