Hi Rosa,
I also found the Sunday breakfast at Dr. Maclaren's office an
unbelieveable experience.
For those of you that are not patients of Dr. Maclaren or live in
far off locations let me explain:
Dr. Noel Maclaren is a pediatric endocrinologist who has done
extensive research in autoimmunity, diabetes and APS 1. He invited
his local patients with their families to his office a few weeks
back to meet one another, share stories and become a support
network. My daughter and I attended and felt a close bond with
every child and adult who was present. Tara took each story to
heart and was reminded of some of the more difficult times in her
life. She hopes the children will email her, ask any questions and
she will be happy to respond. Perhaps she will join this board
along with the other children/adults with APS 1 who use the
internet. Send me a private email and I will send you Tara's.
Rosa, you touch on a difficult question whenever family members are
involved. When Tara was first diagnosed we had no idea that it was
genetic. She had hypoparathyroidism and malabsorption but no one
knew why. Her doctor knew it was a syndrome and she would get
Addisons and she had antibodies indicating diabetes was also a
possibility. It wasn't until she was 26 that we learned she had APS
1 from Dr. Maclaren's research. Our family had various reactions to
Tara's many hospitalizations when she was age 3 to 8. Then she was
fine up until age 26. The grandparents were supportive but aunts and
uncles were not- They just went on with their lives and never took
her illness seriouly.
However once they learned about APS 1- 8 years ago their attitude
softened and they became much more involved when she was in the
hospital and much more supportive as a family.
I think each of us has to follow our instinct and you have a feeling
it is better for everyone not to know the exact nature of you son's
illness. Maybe you have a sense they cannot handle the fact that it
is genetic- that some family members could also have the recessive
gene? I don't know if that is the case anyway but it could be a
normal concern. Maybe you think they would feel differently about
your son or be more worried and anxious than they already are.
Tara is adopted so those issues never came up for us but they are
real issues and can cause anxiety.
But whatever the reason you have so much to deal with just taking
care of your beautiful son ( I met him, remember)and perhaps your
son wants to retain some privacy about the illness as well. Maybe
when he is older he can explain to everyone what is going on and it
will be easier for everyone to accept. I do know, having met you and
listened to you, that you will make the right decision for you and
your family.
Perhaps feedback from other members of this group will also help.
I wish you and your family and all the other families on this board
a good evening.
Linda