Tag Archives: Rare

Mother was accused of BURNING her sons after a rare condition left them with ‘butterfly skin’ 

Mother, 38, reveals police accused her of BURNING her sons after a rare condition left them with ‘butterfly skin’ Melissa Jaquez has two sons with recessive dystrophic epidermolysis bullosa Left the boys with excruciating, blistering skin that meant they could not walk People became suspicious and reported her when they were too ill for school  By Alexandra… Read More »

High levels of rare gut bacteria may be linked to restless legs syndrome

SAN ANTONIO – Small intestine bacterial overgrowth (SIBO) may be more prevalent among patients with restless legs syndrome (RLS), according to preliminary findings from a small, new study. Results show that SIBO was found in all seven participants who have RLS. In contrast, the prevalence of SIBO in the general population is estimated to be no more… Read More »

The most expensive medicine ever treats a rare condition. The price: $2.13 million – Los Angeles Times

Evelyn Villarreal was one of the first children treated, at 8 weeks. Her family, from Centreville, Va., had lost their first child to spinal muscular atrophy at 15 months. Two years later when Evelyn was born a test showed she also had the disease, so the family enrolled her in the gene therapy study at… Read More »