Recently pharmaceutical companies made significant development in producing treatments for certain dwarfism conditions. As a charity we are not in a position to recommend or endorse any treatment that aims to cure dwarfism or change the physical appearance of people. This is a matter for individual choice.
It is important that the charity continues to remain aware and informed about all medical developments, particularly where there may be improvement in the more debilitating outcomes of conditions, such as spinal stenosis and sleep apnoea.
Little People UK have been monitoring the trials for Vosoritide. A treatment for Achondroplasia by BioMarin. We are aware that there are long term studies within the BioMarin trials which may suggest that Vosoritide could help with medical issues such as stenosis and foreman magnum, however this is yet to be proven and we will await the results of such trials. BioMarin specifies that the treatment is designed for children. We strongly encourage any interested members to seek all medical advice available, to make a fully informed decision if any treatments are proposed to them.
We have more recently made aware of other treatments being developed for people with Achondroplasia and for people with Spondyloepiphyseal dysplasia. We are not able to offer more information at the moment.
We must stress that we support our members and other members of the dwarfism community with whatever decision they make, it is our ethos not to exclude anyone, regardless, and we hope everyone within the LPUK membership will take this on board, treating everyone with respect and passing no judgement.
As a charity we promote and celebrate people with dwarfism, and we aim to show that people with dwarfism can live long and fulfilled lives. We will continue to do this whilst supporting everyone within the dwarfism community and we strive to show that being of shorter stature is a positive.