Interviewer: Hello Dr. Krug. You are a specialist in child, adolescent and emergency medicine and are involved as advisory board of the association MCT8 research for the children suffering from AHDS. What has brought you to deal with such a rare disease?

Dr. Krug: In my practice, I look after a child with the Allan Herndon Dudley syndrome. That's a pretty rare syndrome. With a frequency of 300-350 cases, which are documented in the world, this is already a special feature. That's why I was very intensively concerned with the disease. It is common for the paediatrician to build a very intense relationship with chronically ill or disabled children, as well as with the parents, because you see them very often, and the children are unfortunately often more seriously ill, so that represents an intense collaboration.

Interviewer: Dr. Krug, you are also a book author, and have recently written a children's book. This makes it clear that you have a very special feeling for people and a very sensitive view of the situation of your patients. What is special about the situation of children with MCT8 gene defects?

Dr. Krug: The visit to the pediatrician represents an exceptional situation for every sick child, even from my point of view. The child is in an unfamiliar environment and doesn’t know if it will get an unpleasant or painful examination. That in itself requires the ability to introduce or change the perspective of the child. Severely disabled children or especially children with the MCT8 syndrome have no linguistic communication abilities. This makes it a special challenge to take care of these children, because pain reports or other statements are very difficult to read in the children. It takes strong teamwork with the parents, who are usually experts of their children’s different sensitivities, to get close to the child. This has to happen on eye level with a lot of time and empathy. It is also a particular challenge to take good care of severely disabled children in emergency situations. This unfortunately occurs very often, because the disease can often lead to a rapid deterioration. And from my point of view, it is important not to lose focus from the critically sick child while providing care for the emergency situation and calming the parents.

Interviewer: Is there a small ray of hope?

Dr. Krug: The courses of the MCT8 defect are very different. As such, the children take very small steps in development. There are cases described where motor development has occurred for pulling himself up or better sitting control. The children need intensive support, with a larger supply network such as, occupational therapists, speech therapists, physiotherapists, neuropediatrist, even the palliative team is often involved in the treatment of the child. And with this network of help small advances can be made that lead the child to learn a little more self-determination, or communication skills, to lead a contented, good life, and to have little pain.

Interviewer: Dr. Krug, the MCT8 Research Association is committed to providing better treatment options for children with AHD syndrome. What would you wish for the children above all else?

Dr. Krug: I also wish, of course, that research into the MCT8 defect can be promoted, or required, to find new ways and therapies to alleviate the suffering of the children. Especially in the area of supported communication, we provide more communication opportunities for the children in order to offer them a better quality of life...

Interviewer: We sincerely thank you for the interview and are hopeful that the medicine will soon be ready to help the MCT8 children.