By Lupus Survivors and The Truth Staff
The Lupus Foundation of America has conducted a number of surveys about the impact of the disease that affects 1.5 million Americans. One such survey indicates that 63 percent of Americans have never heard of lupus or know little or nothing about the disease.
Over the past several years, at least one person in Toledo has made an effort to change that lack of perception in this area by hosting a walk and by participating in a variety of related activities. This year Rachelle Roy, herself a lupus patient, has organized an entire weekend, this upcoming weekend, to heighten that awareness.
Friday is “Donate a Wig” night from 8 p.m. to 1 a.m. at The Trunk. Saturday is “Wig Giveaway” at Mott Branch Library from 1 to 4 p.m. along with a bowling event at All Strikes Lanes at 7 p.m. Sunday is the “Lupus Walk” at Ottawa Park at 10 a.m.
In addition, Visions Made Possible is presenting a Lupus Awareness Luncheon this Saturday at the Scott Park Banquet Hall starting at 10 a.m.
Roy’s group is dedicating the weekend to Schatzia Depp, who passed from the effects of lupus this past March. The Visions group is dedicating their luncheon to Reeshemah Adams, who passed in 2018.
Lupus strikes mostly women of childbearing age – 90 percent of people living with lupus are women and most develop the disease between the ages of 15 and 44. The symptoms vary – pain, extreme fatigue, hair loss, cognitive issues and physical impairments often occur. Cardiovascular disease, disfiguring rashes and painful joints are common issues.
There are four different types of lupus: systemic lupus accounts for approximately 70 percent of all cases (heart, lungs, kidneys or brain can be affected); cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of cases; drug-induced lupus – another 10 percent – is caused by high doses of certain medications; neonatal lupus is a rare condition in which the mother’s antibodies affect the fetus.
Recently, Rachelle Roy gathered seven other lupus infected women to discuss the impact the disease has had on their lives and families. Here are some of their comments.
I am a 20-year plus lupus survivor. My version of lupus is discoid lupus. Discoid lupus scars my face and it has also taken away my eyebrows. I see a dermatologist, rheumatologist and a family doctor to manage my lupus. I also watch how much stress and sun I allow in my life.
My flare ups occur when my body is at war on the inside. It’s a battle that no lupus survivor can really handle, the battle causes a burning sensation for me.
During the beginning of the pandemic, I was terrified of what COVID would do to my body because I’m not on any medication. I had stopped taking all the medication I was on. The doctor I was seeing didn’t tell me to, I just did. I had noticed for a while that my bloodwork never showed a difference in my taking or not taking the medication. All the numbers were stable. My doctor removed me from his practice because we couldn’t understand each other anymore.
I’m currently under the care of a doctor with ProMedica who is paying more attention to my bloodwork numbers. My doctor has even lowered the number of visits to her office, the number of trips to a laboratory to have bloodwork and I am not on oral medication.
My lupus care has been reduced to applying a cream to my flareups accordingly and I take NO medication and I work in the sun. I have a blessed life living with lupus.
Hi, my name is Alyssa Gaines and I was diagnosed with SLE (Systemic Lupus Erythematosus) in 2017. I had been experiencing symptoms for years of joint pain, fatigue and lightheartedness for years.
I just figured it was neuropathy. It wasn’t until I noticed my hair thinning that my then family physician took a closer look at things. He ordered a series of blood work including an ANA draw. Also, I was sent to several specialists (neurologist, hematologist and rheumatologist.)
Once I was evaluated thoroughly and my results were in, it was determined that I was dealing with lupus in what was considered a mild stage. Since then, I have researched the disease and found that lupus is not just one disease but many diseases – that there are different stages of lupus and that the ultimate goal is to keep your immune system strong.
I am so grateful for my family’s support as well as the support I receive from my sister circle and brave hearts pictured with me. Together we will build each other up and remain positively strong.
Cathy L. Dozier
Hello, my name is Cathy L. Dozier. I am 67 years old, a born-again Christian, happily married for over 44 years and have given birth to three children,
I was diagnosed with Systemic Lupus Erythematosus (SLE or Lupus) in 1987. I was singing with my church choir and started having problems breathing. I went to the emergency room of our local hospital and was told to see an immunologist.
I prayed and chose a doctor to go to. That doctor ultimately became determined to find out what was causing my problems. After numerous tests, he performed the Anti Nuclear Antibody (ANA) test, which verified that I had SLE and SLE was affecting my lungs.
This doctor recommended that I see a rheumatologist since lupus has an effect on connective tissue. My rheumatologist prescribed anon-steroidal anti-inflammatory drug (nsaid) and Hydroxychloroquine (Plaquenil). Although I don’t take Plaquenil (due to the side effects), I rely on my faith in God, vitamins, minerals and herbs. I also try to keep my stress levels as low as possible and exercise regularly. My Lupus appears to be in remission and I pray that it still stays away.
I was diagnosed in 2009-2010 during a period when I was going through a lot of stuff – stress, a divorce. At that time my body opened up with a lot of sores and when I went to the doctor, I was diagnosed with lupus which I had never heard of.
A little while later I was talking with a friend and found out her sister had died of lupus and then I started doing research and found out about all the different kinds of lupus – it’s like cancer with so many different kinds.
I believe that many in the medical profession disregard stress as a factor with lupus but I have taken the spiritual way – no medication. Have never taken medication prescribed for lupus. But I’m still learning. I’ve never found a doctor I feel comfortable with.
The last couple of years have added to issues – I had COVID three times and I’m having an onset of asthma. In a little while I’m going to see a doctor about the asthma, but I’m not going to tell him about the lupus diagnosis – I want to see what he says.
I feel fine though, I feel great. I got rid of the stress in my life and the steroid cream I take cleared up the sores but I still don’t take medication for the lupus.
My name is Jane Hague and I was diagnosed with Sarcoidosis in 2013. Over the past years, sarcoidosis has been running rampant in my body. I’ve lost 60 pounds in a matter of four months.
My body constantly aches and I have very little energy. My skin is very irritated most of time, especially on my face because of I have Lupus Pernio. Sarcoidosis has caused me to have an enlarged liver, spleen, thyroid, and swollen lymph nodes. My eyes become swollen and irritated from itching and burning.
Living with sarcoidosis has made my life difficult and unpredictable. I have some good days and I have some bad days. However, for the past two years, I have been taking steroids and methotrexate for treatment.
Although living with sarcoidosis can be hard I desire to have a good quality of life.
Hi, I’m Na’Tasha and I found out about my own lupus only in 2021 when my mother passed away from it. I found myself reliving my mother’s life. I could not do the things I had been able to do. I finally realized I couldn’t walk, couldn’t see, had no appetite, my hair was falling out. I had been teaching and once again was getting so tired.
My mom only found out about her lupus one month before she passed away, her doctors had been telling her that “we don’t know what it is.”
So I went to a doctor after she passed and the first set of doctors were telling me that the numbers from my bloodwork weren’t high enough and they couldn’t diagnose. I found a second set of doctors who told me that my numbers were off the charts since I saw them after having another flare up.
Now my body will shut down, I need protesting from the sun. Even LED lighting is horrible. You never know what’s going to happen and everyone is so different. But with me, I’m not on medication because of the side effect of going blind. I already have blurry vision and I don’t want to lose my sight.
I have two children eight and five years old, and since my mother had it, we are starting to test the eight-year old to be careful.
My journey started back when I was around 13 years old. I’d complained to my mother of joint pain while playing my violin in the orchestra. By this time, I’d already been hospitalized with some bleeding issues due to low platelet counts. My mother was very keen on paying attention to my symptoms and being proactive with my doctors and care team. At 13, I was very accustomed to numerous doctor appointments, getting blood drawn, trialing different medications.
When my Rheumatologist confirmed the Lupus (SLE) prognosis through my blood tests, I was devastated. Up until that moment, my only encounter with Lupus was with my “Big Mama”, who’d passed recently at that time. Getting that news, I instantly panicked assuming that I’d be bald and die, like my “Big Mama”.
After that, I wanted to understand more about my Systemic lupus erythematosus (SLE) and if it was in fact a death sentence. In the years that followed, I’ve always worked to advocate for myself and make sure that team of doctors and I were aligned on our treatment and health goals. Because Lupus can look like so many other things, it’s really easy to be confused, and misguided when understanding your Lupus.
In my case, my Lupus is extremely mild, I’m sure that has to with the early diagnosis and continued management of my symptoms. With that, I usually forget I have Lupus until it flares up and causes muscle and joint pain, severe fatigue, hair loss, and other minor issues. In addition to my Lupus, I have a heart condition, so managing the two, I have to pay close attention to my triggers and flare ups. I am photosensitive, a day in the sun or at the beach or an amusement park usually is followed by a few days of joint pain and extreme fatigue. Stress and excessive activity are also common triggers for my Lupus.
Working to manage stress and planning for times you know you will not avoid a potential trigger. This includes always wearing sunscreen, planning rest days after excessive exposure outdoors or activities. I want more women that look like me to live long healthy lives. It starts with prioritizing our health and wellness and not taking “no” for an answer when we’re looking for help in diagnosing and managing our health. We have to be our own advocates and demand that our voice is heard and our opinions are respected.
I started walking my Lupus journey back in August 2021. I went to the doctor for a wellness checkup. Then when my bloodwork came back, my platelets were low, my white blood cells count was low, so I was referred to a hematologist. Every time I went to the appointment, he just did the same blood work and tests kept coming back even lower.
By this time, my hair started to fall out, my skin was acting up, my hands were bruising. By November, my hair was damn near completely gone. I lost my sister, December 2, 2021 and then after that my body really started to act up. I lost a lot of weight – literally dropped 25 pounds. I could barely walk on my feet, they were so tender, my skin was tender to the touch. I felt weak, my whole body just hurt, I couldn’t open certain items, had to switch my toothbrush because my mouth was so sensitive.
Now at this point my mom was worried. She ended up driving me to the Cleveland Clinic. They kept me for a whole week and diagnosed me with lupus and connected tissue disease. I have both SLE and DLE so I get infected either way. I’ve had a bone marrow biopsy, a skin biopsy and a liver biopsy because my live numbers kept being elevated. Steroid shots in my head. I had days when I just cried because I felt helpless. I was sad, feeling defeated.
I’m finally able to get back to work but not like I would like because the dental office would be a lot on me, although I miss it. Now with God’s will, I’m working at a day care that I love. Feeling blessed I am alive and able to do it. This is my testimony!