Sharon Cul
Diagnosed at 58

What do you want others to know about lupus?

I guess.... to not give up if you don't feel well. If you know something is just not right with you. It took my doctors 3 to 4 months to get a diagnosis of Lupus. Every possible avenue looking for a difinative diagnosis for your symptoms. As soon as you are diagnosed ....the sooner you can begin treatment.

Why is lupus a cruel mystery to you?

During the process to rule out what could be wrong with symptoms included : extreme fatigue, body aches and pains all over, elevated Sed rate, roof of my mouth was bright red (my dentist found ), other labs were all abnormal. My Rheumatologist at first was thinking Giant Cell Arteritis, I had to have an arterial biopsy on my head at my temple. That was negative. Then she said maybe Polymyalgia Rheumaticia. Then we noticed in my labs that some of the positive results were red flags regarding LES. I then had a biopsy of some lymph nodes in my lungs....negative. Then due to some labs, and more labs, and abnormal results with Cardiac Echogram, abnormal LFT's abnormal Pulmonary function tests, and then a liver biopsy. Turns out I have Cirrhosis as well as LSE. I also have Restictive Lung Disease , my doctors now look back at my having had at least 4 episodes of Bronchitis ending up with Pneumonia 4 times a year.....for the previous 2 years. So, it has been much longer that the symptoms of respiratory issues just weren't on anyone's radar. I was so relieved to finally be starting treatment for all this.

Support this Voice