May is Lupus Month and my hope is that sharing my story might help someone with Lupus diagnosis. After a series of ailments over a seven year period, which included several visits to the emergency room I was finally diagnosed on May 26th 2003. After a three hour long visit to Mount Sinai Rheumatology department, I was finally diagnosed with Lupus and Scleroderma both debilitating chronic diseases which affects one’s vital organs and skin. My diagnosis came 7 years late and I had some damage to my lungs and my digestive system. For me, on top of all the internal damage, my skin was viciously attacked in 2017. For anyone, and especially as a woman who was a former cosmetologist and teenage model, it was crushing.
There is no particular medication to treat Lupus, so you are put on cocktail trials of medications to treat each symptom. My treatment included exploratory research including a painful bone marrow biopsy. I was put on a cocktail of thirteen tablets to control most of my symptoms, as well as also supressing my immune system. So you can imagine my heightened anxiety during this pandemic. Some of the medications do have severe side effects and needs to be monitored by blood work every couple of months. A regular visit to the respirologist for a pulmonary function to check the scaring of my lungs, The ophthalmologist, to check my vision a side effect from one of my medication. With all these am able to live a very healthy life all because, I am conscious of what I put on my body and skin.
As the saying goes, “when it rains, it pours”. Stress is the enemy of our immune system. Yet while all of this was happening, I was graduating from college and dealing with some personal issues as well as raising teenage boys dealing with teen angst.
I have been lucky enough to have very few flares, so in 2017 on a trip to Ghana, I took a tour to a popular rainforest, though the 45 minutes hike in the forest to the waterfalls path was in a shade with occasional mist I came back home with a severe hives and a little sunburn even though I had applied SPF 50 Sunscreen.
I came back to Toronto the next day, and visited the hospital for a check up and all was well, however on the third day, I woke up to severe sunburn and swelling on 70% of my body. My eyelids were so bad, I could not open my eyes fully.
A week with damaged skin Two weeks into Honam routine
My skin was so bad I was unable to leave the house, I had friends fill in a prescription to help with my skin and after a day of it getting worse, I visited St. Michael’s hospital, and the doctors prescribed prednisone to help with the pain and inflammation. However, I knew the side effects and I turned it down, but took his advice on drinking three litres of water to hydrate my skin.
I went to the pharmacy to look for a very moisturising cream and very affordable as I needed a lot on my skin. After I kept running out of the product and seeing no improvement, I turned to tub of Organic Shea butter which I brought back from my visit. I melted it and added vitamin E and oils to heal my skin, I will apply twice a day to my skin. After a few days, I started to see some improvement, however I still had a bit of dead skin. My skin was quiet sensitive so I made myself some a sugar scrub with organic raw cane sugar, as I did not want an infection from the open abrasions. After a week my skin had cleared and friends who saw before and after started to request some of my Shea body butter.
I then saw an opportunity and found a Canadian company that sold other organic body butters, then I started to make large batches. I then chose an eco friendly package and one that could keep the integrity of the product, so I choose aluminum containers.
I now needed a name and I did not have to research hard as I wanted a name that will relate to my skin and my lupus condition. My choice of name Honam, which means Skin in the Akan dialect. And from there Honam Naturals was born.
What is Lupus?
Lupus is a chronic autoimmune disease that affects one’s immune system which is meant to protect the body and organs. Our bodies produces antibodies and proteins that destroys foreign invaders such as bacteria or viruses. Individuals with Lupus produce antibodies that targets the bodies own healthy cells and this can lead to tissue damage, organ failure or death
Lupus is known as a disease of a thousand faces as it affects each one in a different way, it’s not contagious, it belongs in rheumatoid arthritis disease family. It is a disease that is difficult to diagnose so 63% of lupus sufferer have originally misdiagnosed.
There are two types of Lupus, Discoid or Cutaneous that affects the skin.
Systemic Lupus Erythematosus (SLE) the most common, this is when the immune system attacks its own tissues and causes widespread inflammation. It can also affect the skin, brain, lungs, kidney and blood vessels.
Who is most affected by Lupus?
It is estimated that, there are over 5 million people world wide living with lupus, this number is not totally accurate as lots of people have not been diagnosed despite show some symptoms of Lupus . Nine out of ten diagnosed patients are usually women between the ages of 15-44. However Lupus can also strike Men and Children.
Lupus is more common in African descent and Native Indian ancestry. The causes of lupus is unknown, but there are certain studies that prove a relation of genetics, Women’s hormones produced during child bearing age, toxic waste as well as environmental. Until science fully understands how the immune system works, the specific cause of lupus will remain unknown.
- Lupus sufferer experience photosensitivity or unusual sensitivity to the sunlight, this can trigger symptoms such as skin rashes, itching and severe burning and can cause a lupus flare.
- The name lupus is a Latin word for Wolf. It was a name a Dr. Rogerius in the 13th century used to describe the erosive lesion that lupus leaves behind.
- Lupus sufferer usually have insomnia
- 10% of lupus suffers have hives due to allergies and can last for 24 hours or more.
- The average lupus sufferer will spend from $6,000 to $10,000 a year on treatment
- Symptoms of lupus activity will usually decline with age.
- Heart attacks risk are 50 times higher in Lupus patients
Celebrities With Lupus
Seal, Nick Canon, Toni Braxton, Lady Gaga, Selena Gomez and Maya Harris - Vice President Kamala Harris Sister.
During the Month of May, Honam Naturals will be selling a limited amount Tshirts donating all the profits from the T-shirt Sale, as well as a percentage of all our online Sales to Lupus Ontario.