A Brief Overview:
Primordial Dwarfism (PD) is a class of disorders where growth is delayed from birth. Those with PD experience intrauterine growth retardation (IUGR) and are smaller than average babies. IUGR can occur as early as 13 weeks and becomes progressively more severe over the length of the pregnancy. Full term birth weight is less than 3 lbs and lengths are less than 16 inches. Most PDs are born prematurely with an average weight of 2 lbs 3 oz. Adult heights are typically less than 40 inch and the voice is high pitched.
Primordial Dwarfism comprises 5 main groups: Russell-Silver (RSS), Seckel, Meier-Gorlin (MG), Majewski osteodysplastic primordial dwarfism (MOPD) Types I/III and Type II. Primordial Dwarfism can be subdivided into two groups: normocephalic meaning a normal sized head and microcephalic meaning a small head. Russell-Silver is a normocephalic form of PD. Microcephalic Primordial Dwarfism (MPD) includes MOPD II, MOPD I/III, Meier-Gorlin, and Seckel syndrome. There may be some forms of MPD that are as yet unclassified.
The Potentials Foundation began in 2007 as a non-profit serving the MOPD II community. More recently our scope has enlarged to include the MOPD I/III, Meier-Gorlin and remarkably similar individuals. Although the Potentials Foundation sponsors ongoing genetic research there is no definitive test at this time. In identifying MPD geneticist use differential diagnosis, a systematic method used to identify unknowns. Diagnosis is complex and is based on clinical findings using patient history, physical characteristics, and radiographic review.
Inherent to this condition are complex skeletal, dental, vision, and hearing issues, as well as severe brain vascular complications that may lead to aneurysm or stroke. Many will face multiple surgeries within early childhood.
Challenges and Triumphs
Physical issues are compounded by safety concerns and social struggles. It takes tremendous effort to live in a world that does not fit; where basic needs are out of reach. Daily living may present constant challenges, but we believe those with MOPDII, MOPD I/III, Meier-Gorlin and remarkably similar but not otherwise classified MPD are uniquely equipped to rise above every obstacle. Life is approached with vibrancy and an outgoing personality. Their lives are truly inspirational. Size may only describe a person with MPD; it never defines who they are. We see unlimited Potential.