[Skip to Content]
Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
Stories in Other Languages: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Annette: Diffuse Scleroderma

Illinois, USA
I can see where having friends who understand
what I am going through would be a big help.

Red Hibiscus by Sherrill Knaggs, ISN Artist Hi, my name is Annette. I found out I had scleroderma on March 11, 2002. I had no idea what was wrong with me, I just knew there was something wrong. I think I liked it better when I did not know, because the more I find out, the more I worry now.

I'm thirty-seven years old. I have three wonderful kids, and two of them are married and on their own. I have a fourteen-year-old still at home, who is a big help to me. Then there is my wonderful granddaughter who I do not get to see that much. I live in Illinois. I wonder if there are people with this who live in Illinois as well?

I have worked since I was eighteen years old, in jobs from nursing homes to factories, up until last July, when I could not take the pain any longer.

I have had three different surgeries. The first one was on my right hand for carpal tunnel in March 2000. The second one was on my left hand in April 2000. Then in July 2000, they did a right lateral elbow release, which helped a lot with the pain I was having, however about a year later the pain returned. I just thought the surgeries had not been done right. Then my knees began hurting all the time.

I finally told my friend I had to go to see the doctor. I had noticed my face getting harder and harder, and my fingers were swollen all the time. I was able to use my hands less and less every day.

I started having heartburn so bad at night that it felt like I was having a heart attack. I noticed my arms were swollen too, but my friends did not think they were that bad. What was happening was my skin was getting harder, but to me it felt like it was swollen. Most of my family thought I was tanning. They asked me all the time if I was tanning. When I told them no, they did not believe me since my skin was getting darker all the time.

On my first visit to the doctor, he asked how I was doing. I told him not good or I would not be here. He asked what he could do for me. I told him I just needed him to pull up a chair because I had things to tell him. So he did and I started at the beginning and told him all that was happening to me. He told me about scleroderma. I did not really understand what he was telling me. He said I could look it up on the Internet and I would learn a lot more. That's how I found this site. He told me he wanted to make an appointment for me with a rheumatologist. In a week I had my first appointment. I had looked up scleroderma on the Internet and had read everything I could. I was just scared to death to find out for sure I had this.

As soon as the doctor walked in the room he said he knew I had it. I was sent to the hospital for all kinds of tests: lab work, chest x-rays, EKG's, urinalysis, and esophageal swallow. I was given some medicine, and had to make another appointment. At this next appointment, the doctor would have all the tests back and would be able to tell me more. He told me all the things I was afraid he would. He said I had Raynaud's, and that I have scleroderma. He put me on lots of medicines, and took me off work and told me to sign up for disability. He could not believe that I had worked this long with the way I was.

Now I have to go get lab work done every month. I see him again in six weeks to see if I am better, the same, or worse. He said so far I just have hardening of the skin on my face, arms, hands, and neck. The hardening is only in the skin and not the muscle yet, but it could go there too. My internal organs aren't affected yet. I have stiffness and tightening of the skin on my arms, hands, and face. My skin is shiny from head to toe. My mouth is getting so tight that I have trouble opening it to eat. I already have cuts on both sides of the mouth where I have opened it too wide to eat and boy, is that hard to heal.

I have lost all mobility in my hands. At night I can't move my knees and hips because the pain is so great. My doctor said that is because the arthritis is really bad in my joints. After I have been sitting or laying too long in one spot it is difficult and painful to stand up. I have Rheumatoid Arthritis.

If any one can write to me or tell me anything about this disease that would help me understand it better, it would be most helpful and I would be grateful.

I have found this site very helpful in answering a lot of questions. I can see where having friends who understand what I am going through would be a big help. Most people think I look okay. They do not understand I am hurting on the inside so much more than the eye can see.

~Update 4/22/03~

On April 18, 2003, I went to see Dr. Richard Burt in Chicago at Northwestern Medical Facility.

He explained to me the two different types of stem cell transplants. One is the autolougus stem cell transplant and the other is called allogeneic stem cell transplant. The autolougus is where they would harvest my own stem cells and try to reboot my immune system in order to reverse the effect of this disease. This has the lesser degree of risk, but since I am using my own cells to do this, the chances of a remission or reverse effect are possible but it does not have the greater percentage of success in stopping this disease.

The other, allogenic, is where they test my brothers and sisters to see who would match my blood stem cells the best. This has a greater risk since my body could reject the donor blood, but they have medicines that reduce that risk. The donor blood stem cells would come from my sibling that does not have this disease and my immune system would take on the effective immune system that my sibling has, which would be healthy or they will not do this procedure. Although this procedure has more risks involved, including death, the benefit that I could receive is a possible cure for this disease. I have been informed of all the risks, and have talked to my sisters and brother. They are willing to go to the maximum for me.

I will be staying in Chicago for some time in order for them to monitor my progress once I have this procedure. I will also be isolated for a time since they have to give me chemotherapy to kill my own immune system. The sibling-donor will also have to stay in Chicago for a short time to provide the stem cells. The risks to the donor will be minimal.

Anyway, all of this will be expensive. I will have to get a room or efficiency apartment close to the hospital to be accessible for the doctors to monitor me once I am released from the hospital after the transplant.

I will try to call Red Cross before this takes place so we can see if the army will let my son Raymond, who is at war, come home so he can be here with me.

I have four sisters, three who live in Illinois and an older sister who lives in Tennessee. I also have an older brother. In two or three weeks they will all have a blood test to see if one is a good match for me.

I am going to have the stem cell procedure done even if I have to do it myself. I do hope for a good outcome for myself. If not, then I hope they learn a lot so the next person can get something good out of this. I will try to my story as soon as I am able.

To Contact the Author

Annette
New email address needed 11-03-06 SLE
Old Email Prefix: fallingstar_65
Story submitted 6-26-02
Story posted 7-11-02
Story update 4-22-03
Story update posted 5-1-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Carpal Tunnel
Diffuse Scleroderma
Heartburn
Raynaud's
Scleroderma
Stem Cell Transplants

This story is featured in the book Voices of Scleroderma Volume 2!

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

New Personal Stories

Kristi U: Systemic Scleroderma We sold our motel business because it hurt me so bad to work each and every day...
Chris D: Systemic Scleroderma About eighteen months ago my entire body began going haywire...
Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year...
More New Stories
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
 
Go to Annette G.: Systemic Scleroderma
About the ISN

This website is certified by Health On the Net Foundation. Click to verify.We are a full-service nonprofit 501(c)(3) providing stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. This site complies with the HONcode standard for trustworthy health information: verify here.

 

Scleroderma Hotline (English Only)
Toll Free U.S. Call 1-800-564-7099
Direct Line: Call U.S. 952-831-3091

Post a message in Sclero Forums
Email: isn@sclero.org

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States

AKA Scleroderma from A to Z and SCLERO.ORG
Privacy Policy, Financial Disclosure, and Disclaimer.

Home   Medical   News   Sclero Forums   Support   Translations

© Copyright 1998-2014 International Scleroderma Network
All Rights Reserved