The reason for this email is to start researching the behavioral
issues we experience with our Cystinotic children.
I have spent the last 8-9 years struggling to understand and diagnose the emotional/behavioral problems we have been experiencing with our son. After a lot of research on my behalf, reading books, spending hours on the internet, I would end up diagnosing him myself and have the psychologist or psychiatrist agree with it, (after it was suggested). eg, Aspergers, Non Verbal Learning Disorder, ADHD, Obesessive Compulsive Disorder, Depression. (to name a few). However none of these diagnoses were forthcoming until I had to be insistent based on my intensive research into each one.
I would like to hear from families who feel they are in the middle of, or have been through some significant behavioral issues with these children and have wondered if they were connected to cystinosis but had no information.
Apart from the intensive routine of medicines, there is another side to Cystinosis that only the families themselves can really know and understand. We need to give as much information as possible regarding this, as through this research it may be possible to make more connections to Cystinosis than we realized.
This subject would be presented at the next Cystinosis Conference in San Diego in August and we would have a chance to discuss the similarities in these children emotionally and behaviorally, and also provide some practical advice for families who are experiencing problems in this area. It is important to provide our medical researchers with this information but it is also very important to help families realize they are not alone when dealing with these daily issues.
I urge you to write to me regarding any experiences you have had relating to this subject as it will be invaluable information to all of us.
Mrs Belinda Broughton
My email: firstname.lastname@example.org