Re: It's Official per NIH - I'm One of You

[Guest guest]

Not being able to get on everyday like I would like to, I stay always behind.

Lana, are you there now!! Isn't Clair and everyone so kind and wonderful? It

is so nice to be treated with so much respect.

[Guest guest]

Thanks Mike, for filling us in. I'll be anxious to hear whatever

else you choose to share. Please tell Darlene hello for me!

Love Lana

> Don't have all the study test results back yet and they couldn't do

> a couple of them, like the MRI, because their equipment is down.

> But, based on the physical exam and medical history questions,

Nazli

> confirmed with Clair yesterday afternoon that my " diagnosis of EDS

> is confirmed. "

>

> Knees hyperextend to 30 degrees; elbows don't hyperextend at all.

> Definitely have stretchy skin, easy bruising and the cigarette-

paper

> scarring patterns.

>

> I think the biggest shock I had during the exam was finding out

that

> my right shoulder (the one with all the chronic pain for all the

> years) is CONSTANTLY subluxing. It never fully dislocates but is

> totally unstable. I had no idea.

>

> I will put out a separate post later about some of the other

aspects

> of my being here in Baltimore.

[Guest guest]

Thanks Mike, for filling us in. I'll be anxious to hear whatever

else you choose to share. Please tell Darlene hello for me!

Love Lana

> Don't have all the study test results back yet and they couldn't do

> a couple of them, like the MRI, because their equipment is down.

> But, based on the physical exam and medical history questions,

Nazli

> confirmed with Clair yesterday afternoon that my " diagnosis of EDS

> is confirmed. "

>

> Knees hyperextend to 30 degrees; elbows don't hyperextend at all.

> Definitely have stretchy skin, easy bruising and the cigarette-

paper

> scarring patterns.

>

> I think the biggest shock I had during the exam was finding out

that

> my right shoulder (the one with all the chronic pain for all the

> years) is CONSTANTLY subluxing. It never fully dislocates but is

> totally unstable. I had no idea.

>

> I will put out a separate post later about some of the other

aspects

> of my being here in Baltimore.

[Guest guest]

Hi ,

'Technically' I won't 'be' there until Oct. 21st, but I've already

been treated with much kindness and dignity and respect by both Dr.

Francomano and Dr. McDonnel. Several months ago, they interceded

when I wrote them regarding Sis being very ill due to such low

potassium levels. They were so very helpful and so understanding and

kind! They wouldn't have had to take the time to help us, but they

did, and went far beyond expectations! Sis and I owe them a huge

debt of gratitutde!

Love Lana

> Not being able to get on everyday like I would like to, I stay

always behind.

> Lana, are you there now!! Isn't Clair and everyone so kind and

wonderful? It

> is so nice to be treated with so much respect.

>

>

>

>

[Guest guest]

Hi ,

'Technically' I won't 'be' there until Oct. 21st, but I've already

been treated with much kindness and dignity and respect by both Dr.

Francomano and Dr. McDonnel. Several months ago, they interceded

when I wrote them regarding Sis being very ill due to such low

potassium levels. They were so very helpful and so understanding and

kind! They wouldn't have had to take the time to help us, but they

did, and went far beyond expectations! Sis and I owe them a huge

debt of gratitutde!

Love Lana

> Not being able to get on everyday like I would like to, I stay

always behind.

> Lana, are you there now!! Isn't Clair and everyone so kind and

wonderful? It

> is so nice to be treated with so much respect.

>

>

>

>

[Guest guest]

> based on the physical exam and medical history questions, Nazli

> confirmed with Clair yesterday afternoon that my " diagnosis of EDS is

> confirmed. "

Which proves what I have been saying for years. I AM NOT A MUTANT. I am

" Mutant Spawn. "

Dad and I have had this joke since my diagnosis. He said I was a mutant

and I told him he had EDS, so I was mutant spawn. Since he had not been

diagnosed (until now) this issue of who is the real mutant has been

flipping back and forth between us for over 10 years. Now at least we

know I was right all along. : ) Hee hee.

-Barb

[Guest guest]

Wrong, wrong, wrong. Can't teach you anything.

By definition, " mutant " is an aberration of the norm or original

whatever. Since I am older than you, I obviously had it first.

Therefore, I am the original and YOU are the MUTANT. My case is

further proven by the fact that your " condition " has always been

more severe than mine.

> > based on the physical exam and medical history questions, Nazli

> > confirmed with Clair yesterday afternoon that my " diagnosis of

EDS is

> > confirmed. "

>

> Which proves what I have been saying for years. I AM NOT A

MUTANT. I am

> " Mutant Spawn. "

>

> Dad and I have had this joke since my diagnosis. He said I was a

mutant

> and I told him he had EDS, so I was mutant spawn. Since he had

not been

> diagnosed (until now) this issue of who is the real mutant has been

> flipping back and forth between us for over 10 years. Now at

least we

> know I was right all along. : ) Hee hee.

>

> -Barb

[Guest guest]

Wrong, wrong, wrong. Can't teach you anything.

By definition, " mutant " is an aberration of the norm or original

whatever. Since I am older than you, I obviously had it first.

Therefore, I am the original and YOU are the MUTANT. My case is

further proven by the fact that your " condition " has always been

more severe than mine.

> > based on the physical exam and medical history questions, Nazli

> > confirmed with Clair yesterday afternoon that my " diagnosis of

EDS is

> > confirmed. "

>

> Which proves what I have been saying for years. I AM NOT A

MUTANT. I am

> " Mutant Spawn. "

>

> Dad and I have had this joke since my diagnosis. He said I was a

mutant

> and I told him he had EDS, so I was mutant spawn. Since he had

not been

> diagnosed (until now) this issue of who is the real mutant has been

> flipping back and forth between us for over 10 years. Now at

least we

> know I was right all along. : ) Hee hee.

>

> -Barb

[Guest guest]

> By definition, " mutant " is an aberration of the norm or original

> whatever. Since I am older than you, I obviously had it first.

What makes you think you are " normal " (or ever were, for that matter). An

" original " yes, but never normal.

-Barb

[Guest guest]

> By definition, " mutant " is an aberration of the norm or original

> whatever. Since I am older than you, I obviously had it first.

What makes you think you are " normal " (or ever were, for that matter). An

" original " yes, but never normal.

-Barb

[Guest guest]

> > By definition, " mutant " is an aberration of the norm or original

> > whatever. Since I am older than you, I obviously had it first.

>

> What makes you think you are " normal " (or ever were, for that

matter). An

> " original " yes, but never normal.

>

> -Barb

-------------------

Well, it has taken you almost 33 years, but you finally won one.

[Guest guest]

> > By definition, " mutant " is an aberration of the norm or original

> > whatever. Since I am older than you, I obviously had it first.

>

> What makes you think you are " normal " (or ever were, for that

matter). An

> " original " yes, but never normal.

>

> -Barb

-------------------

Well, it has taken you almost 33 years, but you finally won one.

[Guest guest]

Re: It's Official per NIH - I'm One of You

> > By definition, " mutant " is an aberration of the norm or original

> > whatever. Since I am older than you, I obviously had it first.

>

> What makes you think you are " normal " (or ever were, for that

matter). An

> " original " yes, but never normal.

>

> -Barb

-------------------

Well, it has taken you almost 33 years, but you finally won one.

~~~~~~

YEAH!!! You go Barb!!! Go girl GO!!!

[Guest guest]

Re: It's Official per NIH - I'm One of You

> > By definition, " mutant " is an aberration of the norm or original

> > whatever. Since I am older than you, I obviously had it first.

>

> What makes you think you are " normal " (or ever were, for that

matter). An

> " original " yes, but never normal.

>

> -Barb

-------------------

Well, it has taken you almost 33 years, but you finally won one.

~~~~~~

YEAH!!! You go Barb!!! Go girl GO!!!

[Guest guest]

LOL!!! I'm certainly enjoying this little family discussion! Makes

our family look more 'normal'!

Love Lana

> > By definition, " mutant " is an aberration of the norm or original

> > whatever. Since I am older than you, I obviously had it first.

>

> What makes you think you are " normal " (or ever were, for that

matter). An

> " original " yes, but never normal.

>

> -Barb

[Guest guest]

LOL!!! I'm certainly enjoying this little family discussion! Makes

our family look more 'normal'!

Love Lana

> > By definition, " mutant " is an aberration of the norm or original

> > whatever. Since I am older than you, I obviously had it first.

>

> What makes you think you are " normal " (or ever were, for that

matter). An

> " original " yes, but never normal.

>

> -Barb