What You Need to Know About My Disease

Since May is Lupus Awareness Month, I feel compelled to share with you the basic facts you need to know about my disease. I’m speaking in behalf of my fellow patients and our families who want people to understand what this sickness is all about. When you’re perennially sick, it’s quite challenging to live a normal life. There are certain things you can’t do and there are crazy things inside of you that you can’t control. You also can’t expect people to understand you if you can’t make it to certain gatherings or when you have to back out or cancel at the last minute. It’s all part of the package so to speak.

I celebrated my 14th Lupus anniversary last May 10, which was recently declared as World Lupus Day! 🙂 I can’t believe that it’s been 14 long years already and here I am still surviving (even thriving!) by the grace of God. After everything I’ve been through, I never thought I’d make it this far. I’m still amazed at how God continues to heal and sustain me. 🙂 I’ve come to accept that this sickness will always be a part of my life—my own version of the apostle Paul’s “thorn in the flesh.” With acceptance, I’ve learned how to better care for myself and adjust to my limitations. I’ve also learned to appreciate the beauty in restraint and slowing down. 🙂

 

So as I try to raise awareness in my own little way, let me share with you some facts you need to know about Lupus:

Lupus is an autoimmune disease. It affects the immune system, making the body wage war against itself. It attacks different organs of the body specifically the skin, joints, kidneys, heart, brain, and lungs.

Lupus is difficult to diagnose. It mimics other diseases, making prognosis tricky. It takes an average of 4 different consultations before a patient is finally diagnosed with Lupus.

There are 11 criteria for Lupus diagnosis according to the American College of Rheumatology. If a patient has 4 or more of these symptoms then most likely he/she has Lupus. Just so you know, I got more than 4 when I was diagnosed. 🙂

  • Butterfly-shaped rash across cheeks and nose
  • Scaly disk-shaped rash on face, neck, ears, scalp, chest
  • Sunlight sensitivity
  • Mouth sores, tongue sores, inside nose sores
  • Arthritis pain in joints
  • Pain in chest and side when breathing or moving
  • Kidney problems
  • Neurologic problems
  • Blood problems such as anemia, low white cell count
  • Immune system malfunction
  • Antinuclear antibodies

During one of the major flares I had

Lupus is incurable but controllable. To this day, there’s still no cure for Lupus. However, the disease can be controlled through medications, close monitoring (i.e. regular check up and lab tests), and lifestyle change. Patients go through a series of flares and remissions in their lifetime.

Lupus is not contagious. It’s not transmitted through any form of contact. However, some studies show that Lupus can be genetic but this is still inconclusive. In our family, I’m the only one with the said disease.

There are different types of Lupus. Lupus is a diverse disease. There are 4 types of Lupus:

  • Systemic lupus erythematosus – affects joints and organs; this is what I have—the buffet one 🙂
  • Discoid lupus – affects the skin; famous singer Seal has this
  • Drug-induced lupus – develops after a drug reaction
  • Neonatal lupus – affects newborns but often transient; my baby was diagnosed with this when he was born 😦 my doctor advised me not to have him tested again until symptoms show

After a lumbar puncture

Lupus often targets women. 90% of Lupus patients are women. It occurs during childbearing years, ranging from 18 to 45 years old. Men and children are affected, too, but on a smaller scale.

The cause of Lupus is still unknown. There are researches continuously being done to determine what causes Lupus. Some theories include genetics and environmental factors.

Unlike other diseases that have prominent celebrities as ambassadors, Lupus has none of those. There are still a lot of people who are not aware that such a disease even exists. I hope that someday we’ll have someone like Michael J. Fox who will rally for Lupus. 🙂 I’m thankful and blessed to still be a Lupus warrior. We don’t call ourselves survivors because it doesn’t go away. Having Lupus is like being engaged in a battle wherein sometimes your body begins a war with itself or declares a truce.

My life with Lupus is filled with rich experiences. I’ve known God in a deeper way through it. I’ve seen how this disease brought my family closer to each other. My husband first saw me when I was sharing my bout with Lupus in a church event. I experienced a miracle when I gave birth to my son despite having this disease. It has been an unpredictable and challenging life but nonetheless beautiful. I can only give credit to God for all these. It has been a wild ride but I wouldn’t have it any other way. 🙂

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16 thoughts on “What You Need to Know About My Disease

  1. thank you so… much for this very inspiring write up ivy!!! i felt so refreshed with your insights and your journey with our GOD. Blessings to you, omar and timmy. HUGS!!!!!!!!!!!!

  2. Thanks for sharing Ivy. I think one of the members of Backstreetboys, Howie Dorough, was very aggressive in promoting awareness on this because his sister died of Lupus.

  3. hey thanks for sharing about lupus…all i know about it is that ferdinand marcos was diagnosed with it…i meant to wiki search about it but somehow got sidetracked.

  4. Hi Ivy! Thank you so much for blessing us with your inspiring story of faith and trust in our Lord. Your smile is a wonderful reminder of how great and immeasurable His love is, and I thank Him for shining His light on us through you, Omar & Timmy. 🙂

  5. Hi cuz, sharing this to my sister-in-law who has the same kind of disease (hope you don’t mind). I find your blog/story very interesting, informative and at the same time inspiring. This will surely help and promotes awareness to everybody especially to those who are affected and feeling low. You’re a great example of a true warrior and selfless human being. Will always pray for you. Take care! Love you much! God bless you & your family 🙂

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