Scleroderma

Discussion in 'Family Life - Stories, Pictures & Updates' started by dawg53, Sep 29, 2010.

  1. dawg53

    dawg53 Humble

    23,342
    1,237
    448
    Nov 27, 2008
    Jacksonville, Florida
    I am just curious if there's anyone here who has or knows a loved one with this autoimmune disease...specifically scleroderma. My wife has had it since late December 07... I'd like to share our experiences with you and as well as your experiences. Thanks.
     
  2. bargain

    bargain Love God, Hubby & farm Premium Member

    8,372
    64
    326
    Apr 13, 2008
    Bowdon, GA
    My aunt presently has it and sure, send me some pm's as you like....I advise though I am neither a doctor or a nurse or medically qualified in any way...I know it is a very difficult disease.. Have a blessed day...Nancy
     
  3. Sonoran Silkies

    Sonoran Silkies Flock Mistress

    20,149
    296
    401
    Jan 4, 2009
    Tempe, Arizona
    My cousin was diagnosed and given 6 months to live. This was about 25 years ago, and she is still doing fine. I know she has certain medicines that she takes and that she periodically has to have her throat stretched (sounds horrible!). Last time they said they would not be able to do it any more, but she was considering a 2nd opinion. Not sure if she got one. She has had other health issues that I am sure are related, but is one of the most optimistic people I know. I can't tell you much more becuase that is about all the details I know. Oh, it did start with Renaud's Disease quite a number of years previously.
     
  4. dawg53

    dawg53 Humble

    23,342
    1,237
    448
    Nov 27, 2008
    Jacksonville, Florida
    Quote:Thank you for responding. Yes, my wife has trouble swallowing too. Her gastro doctor couldnt stretch her throat/esophagus. It was a muscular issue and the sphincter in her esophagus had disappeared due to severe acid reflux. It is a painful disease, the connective tissues harden inside the body. If they harden in an organ to the point of failure...the only option is a transplant. Scleroderma causes other diseases as well; reynauds syndrome as you stated, osteoporosis, rheumatoid arthritis and a host of other ailments that I cant remember off hand. Gosh, she's had more tests done to her the past 3 years than I've had in a lifetime. Fortunately, she's at a point where the disease has 'leveled' off and not advancing. Now I understand why she's been through so many tests. All doctors can do is treat the symptoms and so far, it has worked. We had never heard of this disease when she was first diagnosed with it. My thoughts were that medications would eradicate it....wrong answer. We see her rheumatologist monthly and bloodwork is done to monitor all the meds she's taking and I make sure there are no contraindications with mixing the meds by confirming with her rheum doc and internist. Sonoran Silkies I'm certainly happy that your cousin proved the doctors wrong and sincerely hope she continues to beat down this terrible disease.
     
  5. Cindiloohoo

    Cindiloohoo Quiet as a Church Mouse

    7,470
    14
    253
    Dec 19, 2009
    Southwest TN
    MOST NERVERACKING day of my LIFE...I was told it was a possibility that BOTH my step daughters had this. THANK the good God in heaven they tested NEGATIVE! We have ongoing skin issues/diet issues with the girls to this day. One is allergic to everything under the sun including foods, and the other has severe cracking bleeding skin all over her body. They got these issues from their daddy. The symptoms are similar to several autoimmune diseases including scleroderma, Reynaud's, lupus, etc. They still have not pinpointed EXACTLY what is wrong wth my girls, and they suffer with many syptoms. My 13 year old has been swelling and having whelps all over her body for the last 2 weeks. Steroids have done nothing to help. Allergy meds haven't phased it. Soaking hasn't begun to do anything for her. It is stressful not knowing exactly what is going on. But I STILL thank God everyday it was not something as serious as schleroderma. It is a dreadful disease, and I am so sorry your wife has been diagnosed and is having to deal with this!! I will think of you two in my prayers and continue to hope the beast stays dormant for her!! [​IMG] [​IMG]
     
  6. dawg53

    dawg53 Humble

    23,342
    1,237
    448
    Nov 27, 2008
    Jacksonville, Florida
    Quote:Thank you Cindiloohoo. We're happy the beast is dormant as well. My wife is on alot of meds and out of them all, it's the prednasone and methotrexate that are the main ones that have to be constantly monitored and adjusted monthly, they're that tricky. I'm sorry to hear your step daughters are having similar issues. I really hate it when kids get these dreaded autoimmune or similar diseases...too much suffering for little ones to endure, they dont understand and it's tough for the parents to explain why. Could it be environmental such as something in the water or lead paint for example? I know you stated it came from their dad, but I was thinking if it was something latent in their genes and whatever it is, was aggravated by something in the environment....I dont know, just a thought. I'm happy your children wernt diagnosed with scleroderma and hopefully none of the other autoimmune diseases. I will say prayers for your children. Thank you again. Jim.
     
  7. Cindiloohoo

    Cindiloohoo Quiet as a Church Mouse

    7,470
    14
    253
    Dec 19, 2009
    Southwest TN
    Jim, my husband was born with autoimmune dysfucntion, almost died SEVERAL times as a baby. Severe asthma from birth, had to do the steroid shots. Quit breathing several times. It is in fact, something in their genetics. They do have environmental triggers as well. Although, tests do not show them allergic to pollens they have fits every year during Spring and Fall. DD 13 also has food triggers. MSG makes her swell random places and SEVERELY. Her wrist is swollen now. They were both tested at Vanderbilt in Nashville last year. Basically what the Doctor said was "You're skin has different genes that dictate how it regulates health and moisture. Basically what you girls have is the worst possible combination of genes to regulate the health of your skin." [​IMG] I about fell over... poor girls! At least it's not life threatening though. Sheesh! They have other non skin issues that are a result of poor genetics. A lot of their issues are related to digestion from their bio mothers side of the gene pool. They just can't get away from it...it's on all sides! We can deal, and have been dealing fairly well. We struggled for 3 or 4 years before we figured out DD 13 was swelling from food allergy/intolerance. It's a constant battle with her to not drive into McDonald's...every kid loves the nasty burgers! Other than that, we are coping, and hoping nothing ELSE pops up! [​IMG]
     
  8. dawg53

    dawg53 Humble

    23,342
    1,237
    448
    Nov 27, 2008
    Jacksonville, Florida
    WOW! I never dreamed of anything like autoimmune dysfunction passed on as such. I've heard of allergies regarding MSG and other products. I bet you have to do selective grocery shopping as we do. We are used to reading labels and actually we dont do it anymore because we know what to purchase lol. I suppose you home school them as well...they could sneak the bad food from their classmates for sure. You must have alot of patience with them too. Bless your heart! I hope they arnt allergic to chickens! My chickens are my therapy and exercise program lol.
     
  9. Sonoran Silkies

    Sonoran Silkies Flock Mistress

    20,149
    296
    401
    Jan 4, 2009
    Tempe, Arizona
    Quote:I am technically not "allergic" to anything, but I DO react to ANYTHING in the air when there is a suffieicent amount. Also react to temperature and humidity changes. It's called vasomotor rhinitis, and it often triggers asthma attacks. NOT fun.
     
  10. crazy goose lover

    crazy goose lover Chillin' With My Peeps

    119
    1
    91
    May 17, 2010
    Athens Illinois
    I had a niece with this awful disease. She was diagnosed as a young child which i think is kind of unusuall. She lived to be 21. She fought a couragous battle with very little complaining though we know it was mentally and physically very hard for her. We miss her a lot. Her parents are still very active with the national foundation. Prayers for you and your wife.
     

BackYard Chickens is proudly sponsored by