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Loving my Life with SLE

Updated on April 27, 2012

Meeting Me

Hi my name is Vanessa and I'm a 32 year old woman living with S.L.E (Systemic lupus erythematosus) a.k.a Lupus. I decided to write this blog because I know that there are many of us out there who are ashamed to talk about the ugliness of this disease and also there are many of us out there not asking the right questions. I was diagnosed at the age of 11 and since then have suffered through many of the complications of this disease. My journey has been a long one, but with God's help I'm alive and still kicking. I live my life to the fullest and when the dark days come or I feel ill I hold on to my faith, and He carries me through. Yes!! living a great life is possible with Lupus, you just have to put yourself in the driver's seat, learn all you can, listen to your body and whatever else you can't control put it in the hands of your creator.

What is it anyway?

So what is SLE or Lupus. SLE stands for Systemic lupus erythematosus, this is an autoimmune disease which means the body's immune system attacks its own healthy tissue. Over time this process can cause chronic inflammation. There is no cure for Lupus at the moment and it can affect the skin, joints, brain, kidney and other organs. Also it has been found to affect African-Americans and Asians more then any other race and is more prevalent in women then men from the ages of 10 to 50.


Frequently affected joints are the fingers, hands, wrists, and knees.

Other common symptoms include:

  • Chest pain when taking a deep breath

  • Fatigue

  • Fever with no other cause

  • General discomfort, uneasiness, or ill feeling (malaise)

  • Hair loss

  • Mouth sores

  • Sensitivity to sunlight

  • Skin rash -- a "butterfly" rash over the cheeks and bridge of the nose affects about half of people with SLE. The rash gets worse in sunlight. The rash may also be widespread.

  • Swolleng lymph nodes.

Symptoms vary with Lupus, almost every single person seems to suffer differently and have a different combination of symptoms. This is why it is so hard to diagnose and a person may very well suffer many years before the proper diagnosis is made.

I was 9 years old when I began exhibiting symptoms. I began with just swollen ankles and fatigue. Later came the stiff neck, weight loss, swollen knees, fingers and wrists. Still I was missed diagnosed at least twice. First I was treated for Lyme's disease. Secondly my doctors thought that I had some sort of infection that had thrown my immune system out of whack. And third, because of all of the inflammation of the joints doctors thought I had Juvenile Rheumatoid Arthritis. I wasn't given the proper diagnosis for a whole year; my mom had to take me to a pediatric rheumatologist who performed a whole series of test, one being the anti-dna test which came back positive.


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    • Lupusmyjourney profile image

      Lupusmyjourney 5 years ago from New York, NY

      Thank you DanaTeresa for your support and encouraging words.

    • Lupusmyjourney profile image

      Lupusmyjourney 5 years ago from New York, NY

      Thank you Uncle Alwayn. I have to say however, it is because I have such a great support system and people who love me I can be brave and confront anything that comes my way. God has surrounded me with love and I'm stronger for it.

    • Lupusmyjourney profile image

      Lupusmyjourney 5 years ago from New York, NY

      Thank you Georgina for the encouragement.

    • profile image

      Alwayn Leacock 5 years ago

      those of us who have been close to you know it all and you have been a beacon if fortitude and inspiration this is an extremely brilliant idea not sure if there is a fb forum on SLE it is yet another avenue for peoples who share a common ailment to meet along with family and friends to share their thoughts and inspire well living amongst each other

    • Georgina_writes profile image

      Georgina_writes 5 years ago from Dartmoor

      Thank you for sharing your story with us. This will help other people, I'm sure. Rating up.

    • profile image

      adriana rios 5 years ago

      Im so proud of u and ur achievements thru everything. U are truly one of Gods many miracles.

    • DanaTeresa profile image

      Dana Strang 5 years ago from Ohio

      It is very courageous for you to share your story. I am sure you have some wonderful things to offer.

      Welcome to Hubpages.