Lupus Awareness and Finding a Cure
Donation protected
Hi, my name is Josephine Riek, I am 22 years of age and I have Systemic Lupus Erythematosus (SLE). On May 10, World Lupus Day, I am shaving my head to draw attention to this auto-immune disease and I need your support to raise money for research to find a cure for this debilitating illness.
What is Lupus?
Systemic Lupus Erythematosus (SLE) is a disease with no cure and no definite consensus of its cause. SLE is an autoimmune disease that occurs when the body’s own immune system attacks various healthy parts of the body. The major symptom is inflammation of multiple systems such as skin, joints, blood, lungs, kidneys, heart, brain and nervous system. Because the signs and symptoms of Lupus mimic those of other ailments, it can be difficult to diagnose.
In the past, the survival rate of SLE was very poor; however, the survival rate has increased due to the use of immune-supressing drugs. Nevertheless, people with Lupus can still die young from heart attack and stroke or infections related to the suppression of the immune system to control the disease. Although people with Lupus may look and appear healthy, it’s a hidden disease and the affects aren’t always identifiable to everyday people. There is an estimated 5 million people living with lupus, yet it is still a widely misunderstood disease.
MyJourney
Lupus is a lifetime burden and mine started from about the age of five (childhood onset lupus is usually a more severe illness and has greater disease damage over time). I regularly complained of muscular aches and pains and arthritic pain in my knees and wrists, which my parents could only explain away as growing pains or “she’s a bit of a hypochondriac.”
Over the following years, other symptoms developed such as swollen joints, hair loss, rashes, fatigue, swollen glands, fluid retention, abdominal and chest pain, shortness of breath, anaemia and pain in most parts of my body. Subsequently, I underwent many blood tests, which revealed my DNA marker was evaluated at 115 (normal range 0-7) and a kidney biopsy, which indicated that I was Class III/IV lupus nephritis (loss of kidney function risk).
By the age 9, my diagnosis was Systemic Lupus Erythematosus. The first drug to be prescribed was the steroid Prednisolone, which unfortunately on high doses comes with many traumatic side effects (especially for young children). In addition, I began trailing the first of many immune-suppressant drugs (given to organ recipients), with more side effects. Consequently, I had to take a cocktail of medications to treat the side effects brought on by each drug.
By age 11, SLE was still not under control so the next treatment was Cyclophosphamide, commonly known as Chemo, given intravenously monthly for six months. This had a positive impact during the course, but SLE got the upper hand once again. At age 13, I underwent another kidney biopsy (now Class IV), so my lupus flare up was only getting worse. Contributing to the medications, hospital and doctor appointments were the tests on my eyes, organs, bone density and bone age being undertaken regularly to monitor the effects of these drugs on my body.
Today
Fast forward to where I am now, slowly getting better over the past couple of years and fortunately taking less medications. I have had experiences that have healed and taught me many ways to make my life easier and have found what has helped my specific lupus.
Why is this important to me?
Unfortunately, the only treatments available for SLE can be very rough and stressful to the body. Usually, people with SLE are on treatments for most of their life, which can really debilitate them (on top of their symptoms).
My life wasn’t like the average child, and I hope that my fundraiser will help people who are in similar situations by figuring out this horrible illness and other immune disorders.
How will you help by donating?
The money I receive from fundraising will be directly donated to the Allergy and Immunology Foundation of Australasia as recommended by my specialist. I will also be donating my hair to the Australia Alopecia Areata Foundation, which make wigs for kids with an autoimmune disease called Alopecia Areata.
Thank you for taking the time to read my fundraiser, please consider donating to my cause and also sharing my Go Fund Me to help get the word out.
Peace and love,
Josephine Riek
What is Lupus?
Systemic Lupus Erythematosus (SLE) is a disease with no cure and no definite consensus of its cause. SLE is an autoimmune disease that occurs when the body’s own immune system attacks various healthy parts of the body. The major symptom is inflammation of multiple systems such as skin, joints, blood, lungs, kidneys, heart, brain and nervous system. Because the signs and symptoms of Lupus mimic those of other ailments, it can be difficult to diagnose.
In the past, the survival rate of SLE was very poor; however, the survival rate has increased due to the use of immune-supressing drugs. Nevertheless, people with Lupus can still die young from heart attack and stroke or infections related to the suppression of the immune system to control the disease. Although people with Lupus may look and appear healthy, it’s a hidden disease and the affects aren’t always identifiable to everyday people. There is an estimated 5 million people living with lupus, yet it is still a widely misunderstood disease.
MyJourney
Lupus is a lifetime burden and mine started from about the age of five (childhood onset lupus is usually a more severe illness and has greater disease damage over time). I regularly complained of muscular aches and pains and arthritic pain in my knees and wrists, which my parents could only explain away as growing pains or “she’s a bit of a hypochondriac.”
Over the following years, other symptoms developed such as swollen joints, hair loss, rashes, fatigue, swollen glands, fluid retention, abdominal and chest pain, shortness of breath, anaemia and pain in most parts of my body. Subsequently, I underwent many blood tests, which revealed my DNA marker was evaluated at 115 (normal range 0-7) and a kidney biopsy, which indicated that I was Class III/IV lupus nephritis (loss of kidney function risk).
By the age 9, my diagnosis was Systemic Lupus Erythematosus. The first drug to be prescribed was the steroid Prednisolone, which unfortunately on high doses comes with many traumatic side effects (especially for young children). In addition, I began trailing the first of many immune-suppressant drugs (given to organ recipients), with more side effects. Consequently, I had to take a cocktail of medications to treat the side effects brought on by each drug.
By age 11, SLE was still not under control so the next treatment was Cyclophosphamide, commonly known as Chemo, given intravenously monthly for six months. This had a positive impact during the course, but SLE got the upper hand once again. At age 13, I underwent another kidney biopsy (now Class IV), so my lupus flare up was only getting worse. Contributing to the medications, hospital and doctor appointments were the tests on my eyes, organs, bone density and bone age being undertaken regularly to monitor the effects of these drugs on my body.
Today
Fast forward to where I am now, slowly getting better over the past couple of years and fortunately taking less medications. I have had experiences that have healed and taught me many ways to make my life easier and have found what has helped my specific lupus.
Why is this important to me?
Unfortunately, the only treatments available for SLE can be very rough and stressful to the body. Usually, people with SLE are on treatments for most of their life, which can really debilitate them (on top of their symptoms).
My life wasn’t like the average child, and I hope that my fundraiser will help people who are in similar situations by figuring out this horrible illness and other immune disorders.
How will you help by donating?
The money I receive from fundraising will be directly donated to the Allergy and Immunology Foundation of Australasia as recommended by my specialist. I will also be donating my hair to the Australia Alopecia Areata Foundation, which make wigs for kids with an autoimmune disease called Alopecia Areata.
Thank you for taking the time to read my fundraiser, please consider donating to my cause and also sharing my Go Fund Me to help get the word out.
Peace and love,
Josephine Riek
Fundraising team: World Lupus Day Shave (2)
Josi Riek
Organizer
Woolloongabba QLD
James Bahnisch
Team member
