A Teenager's Journey With Achondroplasia: Anais’s Story — Transcript

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1. 0:04my name is Anna East I'm 13 and I have
2. 0:07aond plasia typically with aond plasia
3. 0:10you focus on height there are other
4. 0:13aspects of the condition that uh impact
5. 0:17quality of life and uh some are more
6. 0:20serious than others we found out about
7. 0:22anas's dwarfism when I was pregnant I
8. 0:25was completely terrified of that first
9. 0:28diagnosis because I had never even
10. 0:31spoken to a person with dwarfism there
11. 0:34was some unknown uh going into the birth
12. 0:37as she was born uh the first reaction
13. 0:40was she's beautiful I think I'm pretty
14. 0:43like fun and like I'm not that serious
15. 0:48really we're just like everybody else
16. 0:50like we might look different but we like
17. 0:53being treated like everyone else for any
18. 0:55parent out there you know how
19. 0:56heartbreaking it is um
20. 1:02when your child may be in pain or made
21. 1:07fun
22. 1:08of
23. 1:11um that's heartbreaking for a parent an
24. 1:15i is a person she has feelings yes she
25. 1:17may be physically different than other
26. 1:19other children or other people but I
27. 1:22think that it's important to be aware of
28. 1:25those differences without necessarily
29. 1:27calling attention to them whether it's
30. 1:30uh added height uh various tools various
31. 1:34strategies I think it's important that
32. 1:37we provide ni I the tools to be
33. 1:40self-sufficient which I know is
34. 1:41important to her and obviously important
35. 1:44to us Contra pleasure is such a rare uh
36. 1:46condition that it is always reassuring
37. 1:49uh to know and hear that options are
38. 1:51being developed for people who want them
39. 1:54for us as parents um it's exciting to
40. 1:57see what the future can bring and what
41. 2:00options can be available for either Nies
42. 2:02or the future generations with aonia I
43. 2:05see in my future like pretty much what
44. 2:09anybody else
45. 2:11would think graduating School graduating
46. 2:16college going on to a job I like and
47. 2:21then like starting a family
48. 2:32[Music]