Re: Curious again - Pale skin and blue sclera

[Guest guest]

Thank you Kim and Jill for your information and help, I appreciate it

so much. I just get curious about things as I still don't know what

is normal, what it unusual and what is something completely unrelated

as yet!

I think the biggest reason for that comes largely from the

contradictory information I am being given so often by my doctors.

Apart from my original consultation with the geneticist, most of the

time it's purely guess work with them I'm afraid - as there entire

knowledge of EDS stems from a two paragraph section in a text book

viewed 20/30 years ago! One day I'll be told something is definitely

to do with my EDS the next a different doctor will tell me it's

not...so it hardly surprising people get confused, curious and

concerned I guess.

I'm still waiting to see Prof. Bird who I hope will give me some more

solid information on my condition and I'm now planning to try and see

my geneticist again about the situation with my skeletal deformities

to see if it is genetically linked or seperate from my EDS. Here's

hoping that eventually the people that do know about Ehlers-Danlos

will quell the curiosity and concern those that don't cause!

Thank you again for being an outlet for my questions and curiosity.

Love and hugs...Jo

xxx

[Guest guest]

Jo,

I have blue sclera too. I do not know yet what type of EDS i may or may not

have.

Sincerely, S.

Curious again - Pale skin and blue sclera

Hi everyone,

Sorry but I'm back to asking silly questions again! Hee-hee...all I

can say is it's just as well I'm not a cat with all the curiosity I

have! ;-)

What I'm wondering about this time is whether anyone else has pale

skin and blue sclera? I've not been fully typed but we know I

haven't got EDS IV, yet it has often been noted that I have very pale

skin and visible veins. And for as long as I can remember all over my

arms, torso and especially my legs you can see most of my veins very

clearly. Does anyone else find the same or could this be a possible

effect from my suspected cross-overs/mutations?

Also the blue sclera thing is confusing me too as I've been told it's

more commonly seen in OI, Marfan and EDS VII but I have a rather

noticable blue tinge to both of my sclera. Some Dr's have even

commented on it more in curious passing than anything else though.

Again I know there is a possibility I have some cross over or

mutation going on, so maybe the blue sclera comes from that butas

ever I was just curious as to whether anyone else had this and what

type of EDS you have if you do.

LoL - gosh I think I must be on cat life number six at least with all

the curiosity I have inflicted on you all in recent months! Thank you

for enduring my endless and insane questions. My CEDA family really

have been a completely life and sanity saver to me since I found you

all.

Love and hugs....Jo

xx

To learn more about EDS, visit our website: http://www.ceda.ca

[Guest guest]

Dear Jo, Hi this is Helen C from South Oz. I have strawberry-blonde hair and

very fair skin. My grandmother was ish (Auburn hair) and my Dad English

so not much melatonin (spelling). You can see my blood vessels very clearly

also. Now I am older I have a lot of spider veins and deep varicose veins.

The spider veins started when I was about 12. Do you have these also? My other

daughters have very noticeable blood vessels even though one does turn a bit

brown in the summer. We are all Tpye III.

Helen xxx

[Guest guest]

Hi Helen, thanks for your reply! Hee-hee, we sound like peas in a

pod - I too have strawberryish bland hair, fair complexion and

ish ancestry from my maternal side! For as long as I can

remember I've had spider veins all over my legs, used to get teased

about it during gym at school! I'm only 28 but already have the

beginnings of varicose veins in my behind both knees too.

I'm sorry to hear that you and your daughters have EDS Darl and hope

that you are all having painfree days. You mentioned that you are

from South Oz, I am so jealous! Australia is one of my favourite

places and I'm a regular (as my back manager will allow!)visitor to

Queensland as I have rellies up there. Hoping to get the chance to

tour around other states a bit more next time all being well though.

Take care and thanks again for your reply.

Love and hugs....Jo

xxx

[Guest guest]

Hi Helen, thanks for your reply! Hee-hee, we sound like peas in a

pod - I too have strawberryish bland hair, fair complexion and

ish ancestry from my maternal side! For as long as I can

remember I've had spider veins all over my legs, used to get teased

about it during gym at school! I'm only 28 but already have the

beginnings of varicose veins in my behind both knees too.

I'm sorry to hear that you and your daughters have EDS Darl and hope

that you are all having painfree days. You mentioned that you are

from South Oz, I am so jealous! Australia is one of my favourite

places and I'm a regular (as my back manager will allow!)visitor to

Queensland as I have rellies up there. Hoping to get the chance to

tour around other states a bit more next time all being well though.

Take care and thanks again for your reply.

Love and hugs....Jo

xxx

[Guest guest]

Hi Helen, thanks for your reply! Hee-hee, we sound like peas in a

pod - I too have strawberryish bland hair, fair complexion and

ish ancestry from my maternal side! For as long as I can

remember I've had spider veins all over my legs, used to get teased

about it during gym at school! I'm only 28 but already have the

beginnings of varicose veins in my behind both knees too.

I'm sorry to hear that you and your daughters have EDS Darl and hope

that you are all having painfree days. You mentioned that you are

from South Oz, I am so jealous! Australia is one of my favourite

places and I'm a regular (as my back manager will allow!)visitor to

Queensland as I have rellies up there. Hoping to get the chance to

tour around other states a bit more next time all being well though.

Take care and thanks again for your reply.

Love and hugs....Jo

xxx