Sophie Fieldhouse is the little girl with the long golden hair. It’s like the fairy tale that we all read as children. She is living the life of Rapunzel.
Sophie is only six years old, but her hair has grown so much that it almost reaches the floor. This is because she has a rare type of diabetes that is called congenital hyperinsulinism.
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Congenital hyperinsulinism is a rare disorder that causes sufferers to have extremely high levels of insulin. Insulin is a hormone that controls blood sugar levels in the human body. Individuals who have this condition will suffer from episodes of hypoglycemia. Infants and children who suffer from this condition have episodes that are characterized by a lack of energy, irritability, or difficulty feeding. With these episodes of low blood sugar comes the risk for complications such as seizures, brain damage, vision loss, and intellectual disability.
The management of this disease includes medication that will help regulate the blood sugar levels so that the effects of low blood sugar will not be experienced. One of the only treatments for the rare disease is a drug called Diazoxide. A side effect of this drug makes her hair grow much faster than it normally would, turning her into a real-life Rapunzel.
Congenital hyperinsulinism is so rare that it only affects one in 50,000 people. Sophie was diagnosed when she was just eighteen months old. Sophie is part of a group of children who suffer from the condition and are taking part in the clinical trial using fish oils.
The supplements they are made of fish oils. They are given in the form of capsules that are similar to cod liver oil. Sophie has responded so well to her new treatment that she is no longer taking Diazoxide.
She is now free from taking Diazoxide
Sophie’s mother, Amanda Turner, says, “The condition is scary because when Sophie’s blood sugar is low, her parents see a complete change in her. It’s like looking at a completely different child. She gets very hungry and gets the shakes. She has to take extra snacks to school and her hair is also very long because of the treatment.”
Sophie’s classmates, who perhaps don’t realize she is sick, bully her because they don’t understand her condition. They make comments about her long hair, which is affected by her medication.
Since they’ve started their new trial, they have been able to stop taking the Diazoxide. Diazoxide works by preventing the release of insulin, which lowers blood sugar, from the pancreas. It is used by those who suffer from severely low blood sugar.
The fish oil treatment has had an overall good response at the clinical trial. Hopefully, that form of treatment will be available soon for those children who suffer with congenital hyperinsulinism.