~Written By: Christine McVie~
Hello, I am April and I have scleroderma. I chose the title, "Losing Face" because as a victim of scleroderma, your appearance does change and the face is affected in most cases. It is hard to accept and it almost feels as if you have lost your own identity. But always remember...beauty is only skin deep, you are still "you" and that is what counts! This is the main page for this site but there is a menu below to the other pages for easier navigation. They all have menus at the bottom to help you along.
Attention! I have found that many others from other countrys do read at this site, therefor, I am adding this translator for their ease. I do hope everyone can benifit from this site. Each page has one of these. Click on a "flag" in the box for that countrys translation of each page! There will be a page that comes up and wait till the fish stops "loading" and the page and translation will appear. Then just back out of that page when you are done and you return here.
Thanks and people friendly site,
~April~
I decided to do this site when I had read so much on this chronic and incurable disease after a possitive test said that I had it. Then I had posted my story to a site called "I Have Scleroderma" and had many people respond to my story. The last response from a womans daughter who had read my story and asked me to write her Mother as she had all but given up and I did write her and I hope my words helped. So I decided maybe me getting this disease was to help others and if so, then what better way than what you see here! My story will be here along with a lot of links to sites to help victims of scleroderma and their families and loved ones who watch the changes this disease takes the victim on. Lupis is usually added as the disease closely related to scleroderma. The symptoms are comparable except for the hardening and skin problems. The test which detects these disease can not alone say which it is but it is the same test that says it is one or the other. I hope this is a place you find pleaseing as you learn. Public awareness is needed as more research for a cure and a cause is needed and sadly the disease is on the rise. So a pitch here to please donate to a scleroderma foundation to help find a cure!
What is scleroderma? The name is derived from the Greek words "skerosis", meaning hardness and "derma" meaning skin. It literally means hard skin. Scleroderma is a connective tissue disease which affects the connective tissues in all parts of the body. It is an autoimmune disease meaning the body turns agianst itself. The body over produces collagen, the main building block in all tissues. In scleroderma, the excess collagen forms scar tissue and is then called fibrosis, meaning the tissues get hard, firm and tight. Thus the connective tissues in all areas can get hardened and tight and it usually will limit mobility. This includes tendons, muscles and basically all if not most joints in the body and basically any part of the body as collogen is the building block for all parts of our systems.
There are 2 forms of scleroderma. On the page links found on this site, you will learn more about what scleroderma does to the body and how disabiling it can and cannot be. It is a serious disease and it isn't nice, depending on what form you have, it can be life threatening. You will find out details of scleroderma, support sites, information sites and everything in between. Because I am also a victim, I will find as much as possible to help myself and fellow victims and their families. You will learn a lot about scleroderma, by my own research on it and the sites I have searched for. My own story will be ongoing and updated when needed as I am just starting my long walk ahead and it is getting bumpy now! I will have other pages like a poem page for this and a "beauty" page with inspirational images on the importance of inner beauty and a tip and humor page eventually.
I am doing this now as I am having what would be considered as "good" days compared to the road I must walk from now on. I have learned to cope with my health problems and just live around them. I have the best friends I could ever hope for, both online and at home! And support is very important to us, the victims of scleroderma. For this, I do thank you my friends! On the credit page, you will see who inspired me and who supports me as just being a friend and loving me for who I am. You will see the face of scleroderma. My own, though I just look really young for being 42 but that will change as the disease progresses and it usually progresses faster than slower. You will learn more on my Scleroderma Facts page. You will find other sites with images. They may be disturbing but they are a part of what we face and cannot be ignored!
So saying what I have so far to help introduce you to scleroderma, now I lead you down the paths of the disease. To view a page, click on the button of your choice below as there are many links to choose from. I am April and my journey with scleroderma has began and thank you for coming and I hope this site helps you! One more thing, one of my best friends is amazed that I can laugh and talk about this as if everything is ok. Well, I have my bad days of depression, that is a part of what comes with a chronic and incurable disease but you can only cry so much. Sometimes the best thing for me is to laugh and live as normal as possible. It is a roller coaster ride to say the least of how the emotions get tossed around and crying comes with it. Today I choose to laugh and smile, tomorrow is not here so I can't say about how I will be then but I am living for today and when tomorrow comes, I will deal with it then!
NOTE!! Please share your thoughts and stories if you want to by signing the guestbook, that was what I had hoped would happen and it has. And I promise to write all who do when I am able to!
I had open heart surgery on July 28, 2005 to replace my mitral valve with a mechanical one but have yet to add this to My Story but hope to soon! Sorry for not having this update but the recovery is slow and I am beginning to ache all the time and have no energy. I will get to it as soon as I feel like it! Open heart surgery is very difficult to go through!
Special Thanks and hug to my "editor in cheif", Bob. Thank you.....your such a very good friend!!! And also hugs to paulding.net, my server who takes good care of my account....and also Paul who is paulding.net who has turned into a very good friend along the way!!!
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Site and design © By: April Christine Nathaniel.
Permission to share, copy info and page content and to learn granted!!