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New York, United States
Young at heart wife, Mommy (Yes my young adults still call me that!)Administrative Assistant, Kickboxer and Zumba fan...

Friday, November 11, 2011

The "L" Word (lupus that is) - Part III The Grim Details

Ok for all of you who are not familiar with Lupus (known also as systemic lupus erythematosus or SLE) here is a brief overview. Lupus is an autoimmune disease, which means that instead of just attacking foreign substances, such as bacteria and viruses, your immune system also turns against healthy tissue. This leads to inflammation and damage to various parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels and brain.
 Lupus is genetic, primarily affecting women and is more common in women of African heritage, Hispanics and Asians.  In fact 90% of lupus sufferers are women. Lupus is hard to diagnose and is often mistaken for other diseases or illness. In the past some people with SLE were diagnosed as hypochondriacs! Lupus was cited as one of the top 10 misdiagnosed diseases by Readers Digest. There are many theories as to why a person may develop lupus but one of the main theories is that the gene is triggered possible by hormone levels (which may explain why it is so prevalent in women) or perhaps by a virus or (vaccine? My theory).  Here are some of the symptoms and explanation as provided by the Mayo Clinic.
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:
  • Fatigue
  • Fever
  • Weight loss or gain
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure
  • Mouth sores
  • Hair loss (alopecia)
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Easy bruising
  • Anxiety
  • Depression
  • Memory loss
SLE is treatable using immunosuppression, mainly with cyclophosphamide, corticosteroids and other immunosuppressants; there is currently no cure. SLE can be fatal, although with recent medical advances, fatalities are becoming increasingly rare. Survival for people with SLE in the United States, Canada, and Europe has risen to approximately 95% at five years, 90% at 10 years, and 78% at 20 years, and now approaches that of matched controls without lupus.

During my research I also came across an alternate list of criteria which I found to be very revealing. It is as follows:
1. Teenage "growing pains"
2. Teenage migraine
3. Mononucleosis or "Glandular Fever"
4. Severe reaction to insect bites
5. Recurrent miscarriages
6. Septrin (and sulphonomide) allergy
7. Agoraphobia
8. Finger Flexor Tendonitis
9. Premenstrual exacerbations
10. Family history of autoimmune diseases

I marked off a “yes” to many of these symptoms for Patricia. This was scaring me! The more I read the grimmer the prognosis seemed at times.  I had to keep searching for answers. I know this looks like a laundry list of symptoms and medical terms but I am making it my mission to make everyone aware of what Lupus is as so many people don’t know.

My biggest question was why MY daughter had developed the disease. The easy answer would be to blame it on her Hispanic heritage but no one in my husband’s family had ever had anything remotely similar to this.  Unfortunately on the other side of the genetic coin, my family had many instances of auto immune diseases. In my Dad’s family there was the “McLaren Curse”. This happened apparently to the McLaren women who all had what was diagnosed back in the late 19th and early 20th century as Rheumatoid Arthritis. But my thought now was, could this have been Lupus and they had not been diagnosed correctly? My first cousin was diagnosed with Crohn’s Disease and another developed severe alopecia - all auto immune diseases.

So it was me, I was the genetic link.  It was my fault that my baby girl was suffering so. The devastation I felt was overwhelming but the guilt would have to wait. I had to be proactive, both for my daughter and for other women who might be out there struggling with the disease.

All I knew was that I didn’t want my daughter to die. Our lives would never be the same again, but this could be God’s way of making us a catalyst in the fight against Lupus. God’s plan is not for us to question but to obey and as our faith is often tested in ways we can’t understand we must stay still, listen and follow.

I thank you all for taking the time to read this blog and to understand its importance. It may not be exciting or funny, full of wit and humor, but it is my wish that it may save a life one day and THAT could mean everything. Blessings to you all…until next time

3 comments:

  1. I wish your daughter all the best. I have known several people that had lupus and one of them is my boss who is in remission!

    Patricia is very fortunate to have such a wonderful Mom and advocate as you!

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  2. Dede. Thanks so much for the kind words. I am so glad to hear that your boss is in remission. Everytime I hear stories like that it affirms that my daughter will continue to get better and one day be free of the effects of this disease.

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  3. After reading this I find myself very grateful. Grateful for your daughter Patricia to have such an involved, loving and relentless mom. Grateful for my health, while it falters and I find myself battling different problems from time to time, I am whole. Very informative read, thanks for sharing.

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