about Olivia

[Guest guest]

Hola , ¿como va todo?

I have a question for you. I remember you were diagnosed with Rhematoid

Arthritis which is an autoimmune disease, which is also what they consider

connective tissue disorders to be. ( You can tell I have been doing a lot of

research lately...) I am curious, you mentioned that Olivia also has connective

tissue disorder, do you know which type? I am asking all this because I am

trying to figure out if there are any of us with children with CTD or Autoimmune

diseases, that also are carriers of it. I wonder because you have an autoimmune

disease, if that is a gene that is passed onward such as producing CTD. My mom

has Multiple sclerosis, was diagnosed at 50 years old, thus there is still a

chance for me to be a carrier. It now appears that two of my boys have CTD, my

oldest has the extreme elactisity along with other of the characteristics, Santi

was born with AMC which was caused from the CTD. I am new to the CTD research

and it is a bit overwhelming, but the

connections in it all are there, and I know now that I have to get all of us to

a genticist. I was just curious if you have done or found out anything about

the relation with the rhematoid and the CTD of Olivia.

Espero que todo esta bien con vosotros y a ver si en verano nos vemos en

Colorado. Un beso muy fuerte para Olivia.

Besos,

Kelli y Santiago

. heather hyatt <heather@...> wrote:

Olivia definately tires out, quickly. I asked her geneticist about

this as well, and he agreed....That people affected by CTD's ~do~ work a little

harder than a typical person. Their bodies are working harder to compensate, and

keep up.

My best!

HRH

connective tissue disorder and extreme fatigue?

Hi, I have quick question about those of you with kids with connective tissue

disorders. Santi as those of you who know has AMC and beals syndrome. We lately

have noticed that he comes home from school super tired. He is sometimes

sleeping 13 hours a night, falling asleep at 6 p.m. and waking up at 7 a.m. At

first I thought all those hours in school were just too much or he had a virus,

etc. but he doesn´t. We know for the moment his heart is perfect, so it cannot

be causing this tiredness. I then read that often kids with hypotonic muscles

tend to get tired more easily (sounds obvious), because their little bodies have

to work so much harder to keep up with everyone elses pace. Does anyone else

notice this about their kids with CTD? Or should I just consider these past

couple of months a " phase " that he is going through adnI shouldn´t be worried.

Any feed back would be great Thanks to you all,

Sincerely,

Kelli and Santiago

H

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