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Ehlers-Danlos Syndrome User Group
Keritosis Pilaris
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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Keritosis Pilaris

Hmmm.... Just another I did not know that was EDS.  I was doing some more reading about EDS because in my NL appointment I was made aware that my muscles that hold my eye in place hurt when I move it to the extreme left or right.  So of coarse that had me thinking hmm connective tissue and yes it can be the EDS ... go figure.  While I was researching I found that there is increased cases of Keritosis Pilaris with EDS patients.  My 8 year old was first diagnosed with KP when she was like 2.  She gets these little bitty bumps that look like goose skin...bumpy.  At that time she had them on her face and I used some cream to get the little patches of off her face but she has them all over her legs....oh EDS and all the ways you present yourself!
7 Comments
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620923_tn?1416285879

  Mel ...I have something I read was from EDS as well,.....I can not remember what it is called when I locate it I will post it in this thread....I know it is not the same as what ur DD has, but I think it is similar in how it fills with a substance....weird,....and I do not like at all as all r on my face in and around my eyelids and nose area....ugh
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Selma I get weird bumps on my hands too...I have sent you pictures before.  I think the EDS is worse than the chiari!  crazy stuff:(  Not that you want either.  Now that I know what my eye muscles are doing they are driving me nuts too!
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620923_tn?1416285879

  Oh I know what u mean I have those, but can only feel mine...my dad has them like u have them...fibroid cysts...I think....mine just r not as noticeable....but I can feel them....not sure if they r  Sebaceous cysts are small lumps or bumps just under the skin. To be more specific, they are closed sacs that contain keratin -- a "pasty" or "cheesy" looking protein...as I do not think I have ingrown hair in the places I get these...hmmm but this best describes what they r like.....I know I was told it was keratin filled....and was a EDS issue, but heck if I can find the info now...lol...I had one that was oval shaped on my eyelid for yrs and one day it  was bothering me I rubbed it and the keratin popped out and now it is gone....I still have others but this was the largest and longest one I had  had.....glad it is gone now...just wonder about the others....
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1903798_tn?1333908888
hmm I have had one on the top of my nose on the side by my eye for years!  Maybe it will go away:)
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620923_tn?1416285879

  Well the one I had on my eyelid for yrs is gone it was weird as I always felt it as I rubbed my eyes, and this one time I did so, I felt this odd thing and here the  stuff came out of it...it was solid...so now that one is gone and has not come back..it has been a few months too....so hopefully it was the right situation for it to release...I had just had a warm shower...so how knows...lol...
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1903798_tn?1333908888
The ones on my hands have gotten really big and less hard so I am hoping they are on their way out.  I had lost all bumps on my hands after chiari surgery and was sad when they returned.
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620923_tn?1416285879

  With my dad it is getting more noticeable as his skin thins with age....but he had one or 2 that were obvious yrs go...and as I said I have them but I can only feel them, they can not be seen....very odd these things we have with EDS....
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