Re: Anyone have dwarfism in their family?

[Guest guest]

My son is the child with PFFD that Alice was talking about. It's not a form of dwarfism, but his limbs are abnormally small.... not the same thing as dwarfism though- I need to make sure you know that. He will likely be around 4 ft. tall though as compared to 3.

[Guest guest]

> My cousin has a rare form of dwarfism, and I was wondering if anyone

> else has dwarfism in their mito family. I'm not aware of anyone else

> in my family who is a little person, but we have a lot of autoimmune

> conditions and I have either primary or secondary mitochondrial

> dysfunction (Complex I defect).

>

> Take care,

> RH

I have Kearns/Sayre Syndrome and one of the primary characteristics always

mentioned is short stature. I'm 5' 9. My condition is passed on by my

mother, but she's not affected. She's around 5' 5, and everyone else in my

family and average to tall.

B

[Guest guest]

My cousin is just over 3' tall (she's in her 30's). I haven't really

talked to her about my mitochondrial disease, so I don't have the

actual specific from of dwarfism she has, just that it is not

the " garden variety " (not achondroplasia).

I guess I mean less than 4' tall as an adult, although I don't know

if there is a medical discrepancy between short people and little

people at some point. One website says 4'10 " is the cutoff

between " normal height " and little people, another says 5', but I've

known a bunch of people between 4'6 " and 5' who I don't think anyone

would consider a little person. My cousin has a " normal " sized head,

and her body is small, arms and legs are short, and fingers are short

and stubby. Her main problems are spine related.

I am 5'6 " , and my siblings are all over 6', my dad is 5'9 " , and my

mom was 5'6 " too. So for us, it would be unusual to have anyone

under 5' even.

We never thought twice about her being a little person, in fact I

don't even remember the first time I noticed it (maybe high

school?). She is really successful, and just got married last year

(and she's prettier than me, lol).

But I've been thinking lately about family connections, and she is on

my dad's side of the family where all of the autoimmune and

neuromuscular conditions seem to be.

Take care,

RH

> RH - Could you explain what you mean by a rare form of dwarfism?

We have an unusual issue that is not really called dwarfism but is

called PFFD. The child in the family with this condition will not

likely be over 3 feet tall.

>

> Alice

> Anyone have dwarfism in their family?

>

>

> My cousin has a rare form of dwarfism, and I was wondering if

anyone

> else has dwarfism in their mito family. I'm not aware of anyone

else

> in my family who is a little person, but we have a lot of

autoimmune

> conditions and I have either primary or secondary mitochondrial

> dysfunction (Complex I defect).

>

> Take care,

> RH

>

>

>

> Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is automatically moderated or removed depending on the

severity of the attack.

>

>

>

>

[Guest guest]

My cousin is just over 3' tall (she's in her 30's). I haven't really

talked to her about my mitochondrial disease, so I don't have the

actual specific from of dwarfism she has, just that it is not

the " garden variety " (not achondroplasia).

I guess I mean less than 4' tall as an adult, although I don't know

if there is a medical discrepancy between short people and little

people at some point. One website says 4'10 " is the cutoff

between " normal height " and little people, another says 5', but I've

known a bunch of people between 4'6 " and 5' who I don't think anyone

would consider a little person. My cousin has a " normal " sized head,

and her body is small, arms and legs are short, and fingers are short

and stubby. Her main problems are spine related.

I am 5'6 " , and my siblings are all over 6', my dad is 5'9 " , and my

mom was 5'6 " too. So for us, it would be unusual to have anyone

under 5' even.

We never thought twice about her being a little person, in fact I

don't even remember the first time I noticed it (maybe high

school?). She is really successful, and just got married last year

(and she's prettier than me, lol).

But I've been thinking lately about family connections, and she is on

my dad's side of the family where all of the autoimmune and

neuromuscular conditions seem to be.

Take care,

RH

> RH - Could you explain what you mean by a rare form of dwarfism?

We have an unusual issue that is not really called dwarfism but is

called PFFD. The child in the family with this condition will not

likely be over 3 feet tall.

>

> Alice

> Anyone have dwarfism in their family?

>

>

> My cousin has a rare form of dwarfism, and I was wondering if

anyone

> else has dwarfism in their mito family. I'm not aware of anyone

else

> in my family who is a little person, but we have a lot of

autoimmune

> conditions and I have either primary or secondary mitochondrial

> dysfunction (Complex I defect).

>

> Take care,

> RH

>

>

>

> Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is automatically moderated or removed depending on the

severity of the attack.

>

>

>

>

[Guest guest]

When there are genetic defects within one family the likelihood of another

is greater than in the general population, so one may not be related to

another except for the prevalence of an abnormality, often due to fragile

genetic code. In other words, one family may have many strange things going

on that are not due to mito or any other specific disease.

laurie

>

> Reply-To:

> Date: Sun, 28 Dec 2003 19:50:09 -0000

> To:

> Subject: Re: Anyone have dwarfism in their family?

>

> My cousin is just over 3' tall (she's in her 30's). I haven't really

> talked to her about my mitochondrial disease, so I don't have the

> actual specific from of dwarfism she has, just that it is not

> the " garden variety " (not achondroplasia).

>

> I guess I mean less than 4' tall as an adult, although I don't know

> if there is a medical discrepancy between short people and little

> people at some point. One website says 4'10 " is the cutoff

> between " normal height " and little people, another says 5', but I've

> known a bunch of people between 4'6 " and 5' who I don't think anyone

> would consider a little person. My cousin has a " normal " sized head,

> and her body is small, arms and legs are short, and fingers are short

> and stubby. Her main problems are spine related.

>

> I am 5'6 " , and my siblings are all over 6', my dad is 5'9 " , and my

> mom was 5'6 " too. So for us, it would be unusual to have anyone

> under 5' even.

>

> We never thought twice about her being a little person, in fact I

> don't even remember the first time I noticed it (maybe high

> school?). She is really successful, and just got married last year

> (and she's prettier than me, lol).

>

> But I've been thinking lately about family connections, and she is on

> my dad's side of the family where all of the autoimmune and

> neuromuscular conditions seem to be.

>

> Take care,

> RH

>

>

>

>

>

>

>> RH - Could you explain what you mean by a rare form of dwarfism?

> We have an unusual issue that is not really called dwarfism but is

> called PFFD. The child in the family with this condition will not

> likely be over 3 feet tall.

>>

>> Alice

>> Anyone have dwarfism in their family?

>>

>>

>> My cousin has a rare form of dwarfism, and I was wondering if

> anyone

>> else has dwarfism in their mito family. I'm not aware of anyone

> else

>> in my family who is a little person, but we have a lot of

> autoimmune

>> conditions and I have either primary or secondary mitochondrial

>> dysfunction (Complex I defect).

>>

>> Take care,

>> RH

>>

>>

>>

>> Medical advice, information, opinions, data and statements

> contained herein are not necessarily those of the list moderators.

> The author of this e mail is entirely responsible for its content.

> List members are reminded of their responsibility to evaluate the

> content of the postings and consult with their physicians regarding

> changes in their own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who

> sends one is automatically moderated or removed depending on the

> severity of the attack.

>>

>>

>>

>>

[Guest guest]

and others

In mito, short height can be due to poor metabolism and therefore poor

growth. Some folks with mito as a child take growth hormone.

laurie

>

> Reply-To:

> Date: Sun, 28 Dec 2003 11:57:28 -0700

> To: < >

> Subject: Re: Anyone have dwarfism in their family?

>

>> My cousin has a rare form of dwarfism, and I was wondering if anyone

>> else has dwarfism in their mito family. I'm not aware of anyone else

>> in my family who is a little person, but we have a lot of autoimmune

>> conditions and I have either primary or secondary mitochondrial

>> dysfunction (Complex I defect).

>>

>> Take care,

>> RH

>

> I have Kearns/Sayre Syndrome and one of the primary characteristics always

> mentioned is short stature. I'm 5' 9. My condition is passed on by my

> mother, but she's not affected. She's around 5' 5, and everyone else in my

> family and average to tall.

>

> B

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

and others

In mito, short height can be due to poor metabolism and therefore poor

growth. Some folks with mito as a child take growth hormone.

laurie

>

> Reply-To:

> Date: Sun, 28 Dec 2003 11:57:28 -0700

> To: < >

> Subject: Re: Anyone have dwarfism in their family?

>

>> My cousin has a rare form of dwarfism, and I was wondering if anyone

>> else has dwarfism in their mito family. I'm not aware of anyone else

>> in my family who is a little person, but we have a lot of autoimmune

>> conditions and I have either primary or secondary mitochondrial

>> dysfunction (Complex I defect).

>>

>> Take care,

>> RH

>

> I have Kearns/Sayre Syndrome and one of the primary characteristics always

> mentioned is short stature. I'm 5' 9. My condition is passed on by my

> mother, but she's not affected. She's around 5' 5, and everyone else in my

> family and average to tall.

>

> B

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Well..I learned from your message, . A foot is a lot of growth

when you are talking these numbers.

Mom/Alice

> My son is the child with PFFD that Alice was talking about. It's

not a form

> of dwarfism, but his limbs are abnormally small.... not the same

thing as

> dwarfism though- I need to make sure you know that. He will

likely be around 4

> ft. tall though as compared to 3.

>

>

[Guest guest]

Well..I learned from your message, . A foot is a lot of growth

when you are talking these numbers.

Mom/Alice

> My son is the child with PFFD that Alice was talking about. It's

not a form

> of dwarfism, but his limbs are abnormally small.... not the same

thing as

> dwarfism though- I need to make sure you know that. He will

likely be around 4

> ft. tall though as compared to 3.

>

>

[Guest guest]

My mom's first cousin's growth stopped when she was in her early teens- she got up to 4"5 or so I believe (she had issues with failure to thrive when she was younger) this woman is the only other person in my mom's family to have severe mito like symptoms. She also never went through puberty and has thyroid probs and diabetes and hearing loss and coordination probs and has developmental disabilities from what I understand. Her mother is also short (just under 5 foot) and has issues with early dementia and hearing loss also. They live out in the country and really never got much medical help nor is much available where they live. I know my aunt (shes an NP) first thought her cousin had turner's syndrome but now I think that if I'm diagnosed with mito I'm gonna see if they will get her tested too. Not sure if they have the money to do so though. Anyways, always thought this was interesting, I know my great grandma was rather short too, I think right at 5 foot. My male cousin is kinda short too at 5"6 I believe, other than that everyone is normal.

take care,

Adrienne

[Guest guest]

Adrienne

Does your mom's first cousin have a short webbed neck? That is classic for

's syndrome. The genetic defect is known and can be determined

through a blood test. I have worked with students with 's.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Tue, 30 Dec 2003 18:22:29 EST

> To:

> Subject: Re: Anyone have dwarfism in their family?

>

> My mom's first cousin's growth stopped when she was in her early teens- she

> got up to 4 " 5 or so I believe (she had issues with failure to thrive when she

> was younger) this woman is the only other person in my mom's family to have

> severe mito like symptoms. She also never went through puberty and has thyroid

> probs and diabetes and hearing loss and coordination probs and has

> developmental

> disabilities from what I understand. Her mother is also short (just under 5

> foot) and has issues with early dementia and hearing loss also. They live out

> in the country and really never got much medical help nor is much available

> where they live. I know my aunt (shes an NP) first thought her cousin had

> turner's syndrome but now I think that if I'm diagnosed with mito I'm gonna

> see if

> they will get her tested too. Not sure if they have the money to do so though.

> Anyways, always thought this was interesting, I know my great grandma was

> rather short too, I think right at 5 foot. My male cousin is kinda short too

> at 5 " 6

> I believe, other than that everyone is normal.

> take care,

> Adrienne

>