Hello Everyone,
Thank you Linda for sending me this site.I'd like to let you
know about my 24 yo daughter, Becky.( see picture in photos) She has
APS 1. It all started when she was 2 yo. She first got
hypoparathyroism,9 months later the malabsorption started. When she
was around 6 or 7 she got hypothyroidism and pernicious anemia. We
discovered the hypogonadism when she in her early teens. right after
she graduated she got Diabetes. Several years ago Addison's was
diagnosed. She has had kidney stones in the past. She has
intermittent bouts of candida. She has osteoporosis due to poor
absorption Vitamin D. There was a time when Becky had keratopathy
and night blindness from vitamin A deficiency. Once we got her
levels up it resolved. We have been fortunate to be able to get PTH
through Dr Winer at NIH. It is the only way we can keep Becky's
calcium at an aceptable range. I think she would be dead without it.
Becky also for several years has required TPN( total IV nutrition)
and a PICC line. The malabsorption is so bad she gets severely
malnourished and her labs are very bad. The problem with the PICC
line is you end up getting sepsis (blood infection) after it is in
so long. This frightens me as one can get an infected heart valve
from them.
I hope we all can share information. It has always been so
helpful for us. We have learned a lot from others and I hope I can
offer others some help. Sincerely, Susan