ORLANDO, Fla. -- Controversial discussions over drug trials at the Little People of America Conference in Orlando took place Tuesday.
- Little People of America conference meeting in Orlando
- Panel discusses drug testing for dwarfism
- Panelist suggests testing begin at young age
- Drug testing comes with mixed feelings for some in community
A panel of two doctors, a psychologist and an advocacy expert spoke about the types of pharmaceutical testing for the most common dwarf genetic mutation called achondroplasia.
The discussion comes with mixed feelings from the little person community, because while some people want more information about any medical help out there, others feel a true sense of dwarf pride and that no one should have to change.
"God made us like this with a purpose, and I have been all my life very grateful," said Brenda Martinez, an Orlando resident.
Martinez was born in Puerto Rico and as a child went through some testing herself. But when it came time to continue and pursue possible treatment, Martinez ultimately chose not to continue.
"I am very grateful with my parents, because they took my opinion into consideration. And I think every child should have that opportunity," Martinez said.
She brings up children, because doctors on the panel said for these trials to be most successful, the testing should begin at the youngest age possible.
"I am worried because those children do not know what they are going through. And they don't have (an) opinion. So I think that, like in my case, I think that if the children can participate in the process, and can talk, and express themselves, it is the best," Martinez said.
Karri Dawes agrees about discussing this topic with children. Her daughter, Sophia, is 11 and has achondroplasia. Dawes came to the conference to learn more about the drug trial testing to see whether it would be a good option for Sophia.
"When I told her why I was here today, she said, 'I don't know if I want to get taller.' She likes who she is, and I don't want to take that away from her. She is very secure in who she is. She is happy," Dawes said.
"But as a parent, I want to be able to have all the information for her, and not miss on opportunities, as she gets older, she might have said, 'Why didn't you do this for me?' "
So for now, Dawes and Sophia are just learning all they can about all the options out there.
The panel said the best place to start is at a clinical website.