I had heard of lupus but never ITP, so I remember feeling shocked and scared of the unknowns.
- What is your name?
Cathy A. - Where are you from?
Laguna Niguel, CA
- Please share your story of being diagnosed with both Lupus and ITP. How did it all begin for you?
My journey began in 2006 when I was diagnosed simultaneously with both Systemic Lupus Erythematosus (SLE) and Immune Thrombocytopenia (ITP). I had heard of lupus but never ITP, so I remember feeling shocked and scared of the unknowns. I didn’t know anyone with either of these diseases. My life back then was busy…my husband and I had four young children, which kept me busy and on the go, but I was more tired than normal. My fatigue made it difficult for me to make it through the day without a nap…but the naps did little to help. My husband urged me to seek help, so I made an appt. with my OB/GYN first. I had a full blood work-up and lupus profile. My doctor suspected lupus from the initial test results, and my CBC showed a low platelet count (after being run twice). My doctor referred me to a rheumatologist who confirmed the lupus SLE diagnosis. From there I was referred to a hematologist/oncologist to address the low platelet count, and for a bone marrow biopsy to rule out bone cancer because my dad had passed away from non-Hodgkin’s lymphoma. The test came back negative, and I was diagnosed with ITP. - What do you wish others knew about living with both Lupus and ITP, especially those who may not fully understand these conditions?
Being diagnosed with two autoimmune diseases at once can be overwhelming for sure, especially because I don’t look sick to others, but sometimes I’m feeling tired, lousy, and anxious/stressed on the inside. Please don’t tell me “but you don’t look sick”. Educating yourself is always important, but probably the most important thing to remember is to be supportive and understanding if you know someone who is going through this or something similar. - What have been some of the hardest obstacles you've faced while living with Lupus and ITP? How have you overcome them?
Treatment options were definitely limited when I was first diagnosed. I regret to say that I was up and down on prednisone for 10+ years because nothing else worked for me. My biggest challenge has been my low platelet count and inflammation. I currently only take meds for my lupus. I’ve learned what works for me. - Is there a moment or experience in your journey that stands out as a source of strength or inspiration?
The best memory in my journey is definitely attending my first PDSA ITP Conference in Las Vegas in 2010…and getting to meet others with ITP for the very first time…it took almost 4 years since my diagnosis to actually meet someone else with ITP! - What role has PDSA played in your healthy journey?
PDSA means so much to me…they are my ITP family. I’ve learned how important it is to advocate for yourself…you need to educate yourself so you can help educate others. (The medical advisors are a wealth of information!) - Share something unique about you and/or one of your favorite hobbies.
I’m really into hydroponic gardening! It’s pretty easy and very encouraging to see your veggies growing and then getting to eat everything freshly picked! - What can you be found doing on the weekends?
hydroponic gardening, baking, walking/hiking
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