HHT Children and Teenagers
What is HHT?
HHT “Hereditary Haemorrhagic Telangiectasia in Children and Teenagers is an autosomal dominant genetic disorder that can affect any member of the family – where one parent has it – without distinction of age or sex.
HHT is a genetic condition characterised by telangiectases and arteriovenous malformations in specific locations.
Diagnosis of this disorder often takes a long time to establish and there is no cure for it. However, symptoms can often be treated which improve the patient’s quality of life and sometimes their life expectancy. Scientific research should therefore be encouraged. Indeed, rare diseases suffer from a lack of medical and scientific knowledge. But science is progressing and researchers are working more and more often in networks to share the results of their research and move forward more effectively.
Diagnosis in children
Parents will be informed that each child has a 50-50 chance of inheriting the gene. The child’s history of any unexplained nosebleeds will be reviewed. Although the red spots associated with HHT (telangiectases) typically do not appear until later in childhood, their presence on the skin can aid in the final diagnosis.
A CT scan of the lungs and an MRI scan of the brain will be recommended to detect any abnormalities. Genetic blood testing may not always be performed when HHT is suspected. However, if a parent has already been positively diagnosed through genetic blood testing, any child with HHT will have the same mutation.
If the results confirm HHT, the parents will be informed about any appropriate treatment options.
What should I know to take care of my children properly?
It is crucial not to limit your child’s activities simply because they have HHT. Encourage them to participate in various activities and enjoy their life to the fullest. The only activity that should be avoided is scuba diving for children with HHT affecting the lungs. Otherwise, there is no need for undue concern.
Ensure that your child maintains a healthy diet rich in iron and vegetables and stays well-hydrated by drinking plenty of water.
Your child may not fully understand their condition and could feel scared. It is important to offer reassurance and explain the situation using simple, clear language. Encourage your child to ask questions and provide honest, straightforward answers.
If you use babysitting services, ensure the babysitter is informed about HHT and knows the appropriate steps to take in case of an emergency.
A school guide for parents, children and teachers
HHT Ireland proudly presents an annual school guide designed for parents, teachers, and children living with Hereditary Haemorrhagic Telangiectasia (HHT). This resource aims to provide peace of mind and support as children return to school.
Our guide addresses common questions from parents and teachers, offering practical advice and strategies to facilitate a smooth transition back to school. It includes comprehensive explanations and innovative ideas to enhance the educational experience for children with HHT.
Additionally, you will find information sheets that should be completed and shared with your child’s teachers. Effective communication is crucial in fostering a supportive environment for the child and ensuring a seamless exchange of information between school and home.
This guide is designed to be a collaborative tool for both parents and teachers, serving as a foundational support system for children and adolescents with HHT in the school setting.
Essential Tips for Parents Preparing for School
Meet Little Red, a friendly adventurer teaching kids about HHT
A condition that can cause small blood vessels to form differently. Little Red explains that while these changes can sometimes cause nosebleeds or other symptoms, knowing about HHT helps kids and their families take the best care of themselves. Join Little Red on his adventures to learn more about HHT and how to stay healthy and happy!
By working together we can find effective solutions to improve HHT patients in their daily lives.
Your life story is valuable in making a difference, the more we talk about it, the more we can change things.
TOGETHER WE HAVE THE POWER TO CHANGE THINGS
You can send us your story to info@hhtireland.org