Adrenoleukodystrophy Family Support Trust
Although rare, Adrenoleukodystrophy is a fatal, inheritable disorder characterised by the adrenal gland failure and progressive brain damage, which eventually lead to death. Because of this, the Adrenoleukodystrophy Family Support Trust works to provide support and information for children and their families who are affected by this life-threatening disorder.
The ALDFST may also offer assistance to families affected by Adrenoleukodystrophy, and it also offers the chance for you to contact those families if you want to. ALDFST enables you and the rest of the community to understand how the disorder occurs, who are more prone to it, etc.
The Adrenoleukodystrophy Family Support Trust shares that there are different forms of the disease. In severe cases, boys are often the ones who are prone to it, developing within the age range of 4 to 10 years old. Behavioural changes like emotional instability and memory loss are among the symptoms.
Difficulty in motor function, hearing, and vision may also be experienced as well as adrenal dysfunction, which may cause symptoms like changes in the skin colour, nausea, and vomiting. ALDFST can give more information on how you can properly identify the symptoms.
The Adrenoleukodystrophy Family Support Trust offers its services for free. Its office is open during weekdays from 9:30 AM until 5:30 PM, but you can also obtain information from ALDFST in its official website or by calling its helpline at 020 7631 3336.