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BC Gal

New And Need Help Please

11 posts in this topic

Hi,

 

I'm not sure where to start except to say that I am very happy to find this message board with such caring and kind people :) I am hoping that people that are more experienced with the symptoms of this disease can help me.

 

I have not been diagnosed with scleroderma (yet). My bloodtests keep coming back with negative results yet I have definite scleroderma type symptoms on my face. I am a woman in my early 40's with pronounced eye ectropion (lower lids stretched out and tight) and have thickening and extreme tightness in my facial skin. If I open my mouth, the skin gets pulled down over my half of eyes and I can barely see. It feels very tight and uncomfortable all of the time and my facial skin itches like crazy! My face looks like I am wearing a mask, it is so tight. The latest theory from my team of doctors is that I have an extremely rare genetic syndrome called Grzybowski's that demonstrates scleroderma type symptoms on the facial skin only (as well as other symptoms which I have and match this syndrome).

 

I have two specific questions regarding the scleroderma type symptoms on my face that I would really appreciate advice on from people who have experienced anything similar....

 

1. Are there any particular type of emollient creams, lotions, or oils that you found useful to use on your face to bring you relief?

 

2. I cannot close my eyes to sleep at night because the skin is too tight. My eyes remain partially open and they get scratched and are painful. I am unable to sleep through the night and am constantly getting up to put in more eye ointment every 2-3 hours. I cannot use any kind of medical tape to tape my eyes closed because it tears my already delicate skin and I react to the adhesive on the tape. I've tried nighttime eye ointments, eye masks, plastic safety goggles, gauze pads, medical eye pads etc. with no success. Does anyone here have this problem and what works for you? How can I keep my eyes closed safely and comfortably?

 

Thank you very much for any help or suggestions anyone can provide.

 

BC Gal

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Welcome to the forum! I am so sorry to hear about your face tightening and not being able to close your eyes to sleep. I haven't experienced that part of scleroderma so I don't know what to tell you. I am sure that somebody on the forum will be able to help. I send good vibes your way. :D

Take Care,

Nan

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Hi BC Gal and Welcome! I'm sorry you're having these problems and I'm afraid I can't help you! But I'll bet someone on this board will have some ideas as soon as they've had a chance to read your post. I just wanted to say you've come to the right place for help and support.

 

Mary from Texas

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Hello BC Gal,

I am so sorry to hear about what you are going through. It sounds as though your dr's are working to give you a proper diagnosis. Once they do this I would imagine that they would have a treatment that could slow down the progression of your skin dissorder. Dispite the pain and discomfort, I hope that a you can stay positive and take it one day at a time until dr's are able to help you.

 

In your team of doctors, are you also seeing a rheumatologist?

 

Welcome to the forums, there are so many wonderful folks here that are always happy to help when we can.


*WestCoast*

 

********

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Hello and welcome, I'm so sorry your having problems with your face. I noticed you call yourself BC Gal. I am from BC, Canada. Are you a Canadian girl to? I hope you get some relief soon. I'm sure some of the other members will be able to help you out. Take care.

 

Jackie S.

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Hi,

 

Welcome to the Sclero Forums! I'm so glad you found us. You will find so much information, support and friendship here. I'm really sorry to hear about the symptoms you are having. I wanted to give you a link on skin involvement that might help you.

 

I look forward to knowing you better!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Let me add my welcome, BC Girl. Sweet has given you a good place to start searching. Your problem sounds particularly frustrating. I am beginning to get tightening around my eyes but not anywhere near as bad as you have described. I will look around a bit and see if I can find anything else. Meanwhile, I am glad you found us and started posting. Please feel free to add something to the Getting to Know You thread above.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi BC Girl , sorry to hear about your problems and hope you get it resolved soon I use Hypromelose to keep my eyes moist as they get so dry and it really helps perhaps you should ask you general practitioner about this and they maybe able to suggest something hugs Lynn

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BC Gal,

Welcome to the forum Darlin'! As you've already seen, it's a great place for support and helpful information. I wish I could provide some answers to your questions, but I have no experience with what you are going through. It looks like you have received some suggestions and a great link.

 

We do have one link to Grzybowski Syndrome. I had never heard of it before. The link has pictures as well as some good information that might help you determine if that truly might be what you have. There is also a section on treatments. I did find a statement quite interesting that there have been only 30 cases written up in medical journals about this syndrome. That makes you quite unique.

 

I'm so sorry that you are having to deal with this and all the related symptoms. I hope that your doctors can help you get some relief. Please keep us informed on how you are doing.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thank you very much everyone, for your kind and supportive words and your help. It is very much appreciated. For the first time since having these baffling medical symptoms I don't feel so alone. That's the trouble with having an extremely rare disorder like Gryzbowski's, there are very few cases in the world. To find a scelroderma forum that shares some characteristics of my disease has been very helpful. The link to Gryzbowski Syndrome on this website is the best one at describing the disease (thank you Janey!).

 

To answer a few questions: yes, I am from BC, Canada. I have an extensive team of doctors that include a rheumatologist, several dermatologists, dermatological oncologist, opthamologist, internist, as well as a family doctor and the provincial hereditary cancer agency.

 

Thank you very much for the links provided and suggestions for relief. I'm willing to try anything to stop the pain, itch, and discomfort. My eyes are so painful :( My opthamologist ahsn't been particularly helpful in helping me find a solution for my particular problem of not being able to close my eyes for sleep. It's frustrating because he just keeps telling me to put more drops or ointments in but that does not help.

 

Please add any more suggestions if you have them! If I come up with anything that works I'll be sure to share it.

 

BC Gal

(Annie)

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Welcome BC Girl!

 

I don't have anything to add at this time but I wanted to jump in and say hi. I can't even imagine what you are going through with your eyes. Hopefully you will find something that works and you will be able to get some sleep and a little relief. Hang in there....

 

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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