The Only Known Twin Girls With Progeria: Elis and Eloá, Lonafarnib, and a Family in Roraima

Elis and Eloá Lima Carneiro were born premature at 32 weeks in Boa Vista, Roraima, Brazil. At first they looked like other small infants. Around four to seven months, hair thinned, skin wrinkled and dried, weight gain stalled, and facial features sharpened. After months of referrals they were diagnosed with Hutchinson-Gilford progeria syndrome (HGPS), a sporadic mutation in the LMNA gene that produces progerin, an abnormal lamin A protein that destabilizes the cell nucleus and drives accelerated aging. The Progeria Research Foundation and later a published case report described them as the first documented female monozygotic twins with the condition. Worldwide, HGPS affects on the order of one in several million births; a few hundred living patients are known. Average survival without disease-modifying treatment has been about 13 to 14 years, mainly from early atherosclerosis.
Their mother, seamstress Elismar Lima Carneiro, already had a large family. She left work to care for the twins. A neuropediatrician in the public system, Charlote Briglia, followed them. Genetic confirmation involved specialized testing linked to U.S. centers. The only drug approved specifically for HGPS is lonafarnib (Zokinvy), a farnesyltransferase inhibitor that limits toxic progerin accumulation. The FDA approved it in 2020 after trials showed better weight trajectories, reduced vascular stiffness, and longer survival. Brazil’s Anvisa has allowed access through compassionate-use and import pathways; the twins have used the imported medicine along with nutrition support and physiotherapy. It does not cure the syndrome. It can slow some damage.
The family opened an Instagram account that grew from tens of thousands of followers to more than a million. Crowdfunding campaigns raised money for care, travel, and household costs—one early drive hit its target in a day. Coverage in Brazilian media framed the girls as a rare scientific case and a public story of a single mother and older siblings, especially brother Guilherme (Pedro Guilherme Iago), documenting small motor gains and birthdays. By ages three and four they remained very small—reports cited weights around 5–6 kilograms and heights near 60 centimeters—while cognitive development was described as closer to typical for their chronological age than their bodies suggested.
HGPS is not inherited from parents in the usual sense; it is almost always a new mutation in the child. That two identical twins share it is expected once the mutation is present in the single embryo that split. What is unprecedented is simply that the pair survived to diagnosis and became visible. Solidarity and a costly imported pill do not erase cardiovascular risk. They buy time, monitoring, and a childhood that is public, photographed, and medically attended rather than invisible.
Sources
G1 and UOL reporting from Roraima (2023); Revista Crescer on the twins at ages three and four; Progeria Research Foundation context; published case note on first female monozygotic twins with HGPS; FDA/trial literature on lonafarnib.