Sisters With Addison's Disease

Olivia was diagnosed with Addison's disease at almost 3 years old in July 2008. Little sister, Kinsley, was diagnosed with Addison's @ 7 months in Feb. 2011. We now know they were both born with it! Addison's Disease is an extremely rare disease occuring in about 1 in 400,000 people. Also called Adrenal Insufficiency, the adrenal glands do not produce cortisol. Cortisol is a hormone essential to life, and effects almost every organ in your body. It helps your body cope with any type of stress, both physical or mental. It often goes undiagnosed until an emergency situation called an Addisonian Crisis. With lifetime daily steriods (Hydrocortisone) both girls are expected to have normal, happy lives...just with a little extra precaution and lots of extra love. We are so thankful both our girls were disgnosed before it was too late.

Friday, February 27, 2009

Great news!

Well...I've got some great news. A couple of weeks ago I took Olivia for some bloodwork ordered by Dr. D, her endo. When we got back from vacation, I called for the results. A very excited Dr. D called me back with great news. If you remember, Olivia's ACTH levels were still around 5200 last time she had blood work. Well, guess what...Dr D was thrilled to inform us that her numbers were now in the 500's! This ment we could continue giving her hydrocortisone only twice a day, instead of 3! Yippie! He also said her aldosternone numbers were we could stop giving her the Florinef (salt). =) He was also happy that her blood didn't show any traces of thyroid antibodies, or adrenal antibodies. was a GREAT phone call and we, along with Dr D, are thrilled by her improvments!

As for Olivia's day to day life...she is amazing! She seems to have what we call "a super immune system" now! Seems like everytime she seems to be getting sick, it only last about a day...and then she is 100% again! John and I are still trying to get used to that...we still hold our breath and panic a little with every sniffle! We still carry the thermometer and Motrin everywhere =) But I guess this is something that will follow us for awhile! We will eventually be able to relax...but I think at this point we are still hardwired to feel her forehead 12 times a day! =0


Juliet said...

Wow I have been searching for someone whos born w addisons disease. My son is 10mos old and was diagnosed at 3 weeks old. I would really appreciate it if you could email me

Anonymous said...

Hello my daughter was recently diagnosed and I would love to get more information from you. Angelina