What is Lupus? Ask A Question Tuesday – #LupusAwarenessMonth

Hello Friends,

May is Lupus Awareness Month. This May, the Lupus Foundation of Kenya has planned a series of events and projects to help relate awareness and provide information on Lupus for those who need it. I thought we’d start the information campaign a little earlier on here.

We all agree that a part of finding solutions is getting information. After the very successful She Blossoms Lupus Awareness Day, I have decided to commit more of my time helping others get information about Lupus. One of the ways I can do this is by consulting with lupus fighters, their families, doctors, health care givers, insurance providers and so on.

I’ll start us off with 2 questions and answers. You can add more questions in the comments section of this note and we can start looking for answers. Simpler answers will be provided responses immediately. But if anything needs further research, my team and I will put effort on it and post a longer note – with expert opinions – next Tuesday.

Please note: Sheblossoms will not recommend a particular regiment of treatment or management. We will simply provide information to help you explore your options and hopefully make better decisions about your medical care.

So here we go!

1. What is Lupus? 

Lupus is an autoimmune disease. Autoimmune means that your immune system identifies tissue and organs as though they were a virus, bacteria or foreign body. The immune system then launches an immune response meant to protect your body but which instead harms it.

Symptoms can be mildly irritating, moderately disruptive or severely debilitating and life-threatening. They vary from rashes, inflammation, arthritis-like symptoms to renal failure and cardiac disease.

There are 3 main types of lupus, although lupus can have a few dozen variants within the categories.

a. Systemic Lupus Erythematosus – this affects connective tissue, body organs and the circulatory system (blood, heart and veins.)

b. Discoid Lupus – this affects the skin although it may or may not have aspects of systemic lupus.

c. Drug Induced Lupus – certain types of medication can induce lupus. Once those drugs are withdrawn the condition often resolves itself.

2. How do I know I have Lupus?

Because lupus often mimics other illnesses and disorders, it usually takes a while before diagnosis can come by. If you have had persistent issues of inflammation, fatigue and infection, your doctor might begin to screen you for Lupus.

A doctor who specializes in the care of Lupus patients is called a rheumatologist. A rheumatologist treats patients with autoimmune diseases such as lupus, arthritis, multiple sclerosis and the like.

It is much easier to get started on lupus screening if you see a rheumatologist. The doctor will look out for 11 main signs of Lupus.

Fact: there are currently 8 rheumatologists in Kenya to a ratio of about 200,000 lupus patients. (consider the fact that they also care for other patients with other illnesses that fall under rheumatology, in addition to training and teaching time.)

Have more questions about Lupus? Please add them to the comments section now! 

A Little Note about Me: My name is Juliet Maruru. If you’ve visited my blog before you probably know that and know that I have been dealing with chronic illness for a while. The symptoms have yoyod from mild to horrid to really life threatening.

A few months ago my diagnosis was upgraded to Mixed Connective Tissue Disease (a crossover of Lupus, Scleroderma and Myositis) with Secondary Cushings Syndrome (hormonal disorder affecting adrenal glands) and 2nd Stage Heart Disease. My doctors, nutritionist and fitness trainers have helped me work hard enough that I am hoping that in a few more months I can have the Cushing’s and heart disease catergorised to something with a better prognosis. I expect to continue managing MCTD for the rest of my life.

All of this has been taxing, mentally, emotionally and financially; not just for me but for my family, too. The #Sheblossoms campaign was started in the hope of alleviating the financial strain, and it has, in a small way – and for the donations, support and outpouring of love, I am deeply and incredibly thankful. I expect to continue dealing with these expenses – mental, emotional and financial – but in the campaign I found some kind of renewal and purpose.

I still don’t know for sure what my prognosis is. But as I wait for direction and resolution, I have decided to do my very best to help others find answers and guidance in accessing resources. A little part of this is selfish – from the realization that continuing in the dark silence I’ve existed in for the last few months might in a way lead to my giving up a lot sooner. But a large part of it comes from seeing how much my friends were willing to put themselves out there for me, and in a way completely removing my justification for self-pity.

This is a new leg of the journey for Sheblossoms. I suppose there will be more reflections of it on this blog and on my personal journey. Please enjoy the ride with me.