Living with Clediocranial Dystosis#1

[SJCSue]

Here is the first part of my story:
Living with Cleidocranial Dystosis
By Susan Hernandez
Imagine yourself bagging a bag of groceries such as milk, apples, and orange juice, and as you put the full bag in the customer’s cart, you feel that your shoulder has become very sore. You realize you crossed your arms across your body and your incomplete clavicle (shoulder bone) went into the muscle in your shoulder. The pain continues for another thirty minutes and suddenly you decide to take two tablets of Aleve. After another thirty minutes, you start to pack the customer’s bag lighter than you normally bag them.
The scenario, I mentioned above is one that I live with every day which sometimes is hard and/or challenging. I must be constantly aware of what I am doing every day and I have to be very careful of the different movements that I may make. I was born with a mild case of cleidocranial dystosis, a rare condition where the clavicles and the skull are not complete. I have a mild case of cleidocranial dystosis so my skull is complete but my clavicles are not. I can lift my fifty pound and four year old nephew, Matthew but I always pay for the pain later on and have to take two tablets of Aleve. When I am at work at Stop and Shop in West Islip, I tell the customer whom I am bagging for that I am going to bag the bags light because my shoulder is very sore. The customers usually understand when my shoulders are very sore but some customers do not understand why the bags are light and are very hurtful. For instance, they do not think that I am not able to pack a very heavy bag and they bag the order by themselves or treat me as if I am stupid and I should not be a bagger. When my shoulders become sore or in general, I like customers who are older, have back pain and/or had operation. Even though, my shoulders are usually not sore, I prefer to bag them lightly due to my condition. Sometimes, I put the light bag on the selling counter and continue to bag. After finishing the bag, I let the customers put the heavy bag in their own cart. I also let the customers put their beer, soda and Snapple packs in the cart. Customers who had me before are very understanding when I ask them to put the bag and pack in the cart.

 

[levimanW23]

Here is the first part of my story:
Living with Cleidocranial Dystosis
By Susan Hernandez
Imagine yourself bagging a bag of groceries such as milk, apples, and orange juice, and as you put the full bag in the customer’s cart, you feel that your shoulder has become very sore. You realize you crossed your arms across your body and your incomplete clavicle (shoulder bone) went into the muscle in your shoulder. The pain continues for another thirty minutes and suddenly you decide to take two tablets of Aleve. After another thirty minutes, you start to pack the customer’s bag lighter than you normally bag them.
The scenario, I mentioned above is one that I live with every day which sometimes is hard and/or challenging. I must be constantly aware of what I am doing every day and I have to be very careful of the different movements that I may make. I was born with a mild case of cleidocranial dystosis, a rare condition where the clavicles and the skull are not complete. I have a mild case of cleidocranial dystosis so my skull is complete but my clavicles are not. I can lift my fifty pound and four year old nephew, Matthew but I always pay for the pain later on and have to take two tablets of Aleve. When I am at work at Stop and Shop in West Islip, I tell the customer whom I am bagging for that I am going to bag the bags light because my shoulder is very sore. The customers usually understand when my shoulders are very sore but some customers do not understand why the bags are light and are very hurtful. For instance, they do not think that I am not able to pack a very heavy bag and they bag the order by themselves or treat me as if I am stupid and I should not be a bagger. When my shoulders become sore or in general, I like customers who are older, have back pain and/or had operation. Even though, my shoulders are usually not sore, I prefer to bag them lightly due to my condition. Sometimes, I put the light bag on the selling counter and continue to bag. After finishing the bag, I let the customers put the heavy bag in their own cart. I also let the customers put their beer, soda and Snapple packs in the cart. Customers who had me before are very understanding when I ask them to put the bag and pack in the cart.

Whoa! thats cool. my names levi by the way. im a freshman in highschool and also have Cleidocranial Dystosis. im not gonna lie i hate it. my skull hardend but my clavicles are disconnected and my adult teeth havent grown in yet (which is another thing caused by the disorder) im in marching band as a baritone player so i know how you feel when your shoulders hurt. mine feel the same way. if you have any good sites for more information i'd like to know about them cuz i dont really know much about Cleidocranial Dystosis. any info would be great! Thanks!
Levi

 

[Buffalo]

I am interesting in anything genetic disorders. Do you know which chromosomes Cleidocranial Dystosis comes from ??
I googled it and found this quote:

Cleidocranial dystosis is an inherited disorder of bone development transmitted with an autosomal dominant pattern. Characteristics include absent or incompletely formed collar bones, dental abnormalities, joint laxity, and a characteristic facial appearance (heavy brow, protruding jaw, wide nasal bridge, and malaligned teeth).

Dental abnormalities may include prolonged retention of the baby teeth and delayed eruption of the permanent teeth, often with slow or abnormal development.

It is interesting that it is inherited.

 

[ma_lin_91]

Here is the first part of my story:
Living with Cleidocranial Dystosis
By Susan Hernandez
Imagine yourself bagging a bag of groceries such as milk, apples, and orange juice, and as you put the full bag in the customer’s cart, you feel that your shoulder has become very sore. You realize you crossed your arms across your body and your incomplete clavicle (shoulder bone) went into the muscle in your shoulder. The pain continues for another thirty minutes and suddenly you decide to take two tablets of Aleve. After another thirty minutes, you start to pack the customer’s bag lighter than you normally bag them.
The scenario, I mentioned above is one that I live with every day which sometimes is hard and/or challenging. I must be constantly aware of what I am doing every day and I have to be very careful of the different movements that I may make. I was born with a mild case of cleidocranial dystosis, a rare condition where the clavicles and the skull are not complete. I have a mild case of cleidocranial dystosis so my skull is complete but my clavicles are not. I can lift my fifty pound and four year old nephew, Matthew but I always pay for the pain later on and have to take two tablets of Aleve. When I am at work at Stop and Shop in West Islip, I tell the customer whom I am bagging for that I am going to bag the bags light because my shoulder is very sore. The customers usually understand when my shoulders are very sore but some customers do not understand why the bags are light and are very hurtful. For instance, they do not think that I am not able to pack a very heavy bag and they bag the order by themselves or treat me as if I am stupid and I should not be a bagger. When my shoulders become sore or in general, I like customers who are older, have back pain and/or had operation. Even though, my shoulders are usually not sore, I prefer to bag them lightly due to my condition. Sometimes, I put the light bag on the selling counter and continue to bag. After finishing the bag, I let the customers put the heavy bag in their own cart. I also let the customers put their beer, soda and Snapple packs in the cart. Customers who had me before are very understanding when I ask them to put the bag and pack in the cart.

Hi susan!

Im a 16 years old girl from Sweden and i also have Clediokranial Dystosis.
My teeth are affected and sometimes my back hurts. I got to know this when i was about 10 year old.

 

[jazzy]

I am sorry to hear you guys have those disorder. I never heard of it before but this is new to me. HOpe they will find cure for it.

 

[lillie2121]

Hello! I would like to talk with you my daughter is 3 her and her daddy have this too i dont know much about it would like to learn

 

[Mary Ellen]

I understand

My name is Mary Ellen and I am 33 years old. I was diagnosed with Clediocranial Dystosis when I was 2 years old. The lack of clavicles has been the least of my worries. I had supernumerary teeth and had braces for 10 years and had several surgeries on my mouth, including upper and lower jaw surgery. I have also had problems with most of my joints. Tendinitis, Bursitis, knee surgery and two hip surgeries. I am now having back pain from the lordosis of the spine. This fun never stops. My husband and I have also decided not to have children after we were told that I might pass on this abnormality. It is so good to know that I am not alone in my uniqueness. Sorry for the pain and I understand fully what you are going through.

 

[Smurf]

My name is Mary Ellen and I am 33 years old. I was diagnosed with Clediocranial Dystosis when I was 2 years old. The lack of clavicles has been the least of my worries. I had supernumerary teeth and had braces for 10 years and had several surgeries on my mouth, including upper and lower jaw surgery. I have also had problems with most of my joints. Tendinitis, Bursitis, knee surgery and two hip surgeries. I am now having back pain from the lordosis of the spine. This fun never stops. My husband and I have also decided not to have children after we were told that I might pass on this abnormality. It is so good to know that I am not alone in my uniqueness. Sorry for the pain and I understand fully what you are going through.

mary ellen, my name is nick, i am 19 years old. i was diagnosed with cleidocranial dystosis 10 years ago and have been going for orthodontic treatment ever since. For me it was just my teeth really, only one of my colar bones is not fully formed, other than that i don't have anything else wrong. What i'm trying to say is that, for ten years i have despaired about my problem and now i see that there are people for whom it is much much worse and suddenly my problem doesn't seem that bad.
next year i am going for double jaw surgery, like you had and to be honest am a little nervous!!
I hate my problem so i can only imagine how painful it must have been for you!!
i'm really sorry that this condition has stopped you from having kids!!
You have been a sort of inspiration to me to not give up, because as i said i now realise that i don't have it that bad!
i hope you stay well and keep strong, keep going!!

 

[webexplorer]

Does the Lyme Disease caused this Cleidocranial dystosis?

I was just thinking that a Lyme Disease (LD) might have interfered with a human's DNA. I remember a video clip on PBS about LD issue. The Lyme's parasite is very aggressive and shaking because there is no cure which is hard to get into the Lyme's DNA because of the shaking itself. For example, an ideal of a sperm is slow moving which is easy for a medicine to get in it, but it won't work for the Lyme. If the LD is the responsible for the Cleidocranial dystosis, does a doctor ever talks about it? This reason is that DNA breaks down and divides into unhealthy structures in the human system, and there are many unknown paths where the original have started the problem - not just only LD. Sorry, this is a boring subject.