Luciana Wulkan The Girl Whose Muscles are Turning to Bone

Fibrodysplasia ossificans progressiva (FOP), an affliction that turns muscle into bone. Luciana Wulkan and Robert Kinghorn are two of the few UK people with this rare condition.

As Luciana’s condition escalates, she may contort and freeze into a set position. If she’s lucky she may be able to choose that position for herself, if she isn’t her body will choose for her.

Hayley Okines - Hope for Hayley

Recent research in the USA may mean there is hope for Hayley. A drug developed for cancer may offer a treatment for Hayley Okines’ Progeria.

Having identified the defective protein, American researchers, testing the progeria cells they had collected, made an exciting discovery. A drug developed for cancer treatment restored the nucleus of the cells to a near-normal appearance. The drug is called a farnesyltransferase inhibitor or FTI.

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