Lupus blogs can help provide support and advice for those with lupus and their friends and families.
Lupus is an autoimmune disease that can affect many parts of the body, including the skin, joints, blood cells, kidneys, heart, lungs, and brain. Around 1.5 million people in the United States have some form of lupus.
Lupus is a condition that is difficult diagnose, due to its many associated sign and symptoms mimicking other ailments. The most distinctive characteristic of lupus is a butterfly rash that develops across both cheeks.
Although lupus affects mostly women of childbearing age, the disease can also develop in men, children, and teenagers. Most individuals develop lupus between the ages of 15 and 44 years.
Whether you have just been diagnosed with lupus or have been living with the condition for many years, dealing with lupus on a daily basis is not an easy task. Lupus experts and those living with the disease are at hand to provide advice and tips through lupus blogs.
Here are Medical News Today’s choices of the 10 best lupus blogs.
Sara Gorman writes the blog Despite Lupus. Sara was diagnosed with lupus when she was 26 years of age. Determined not to let her condition change her future plans, she battled to maintain her demanding work schedule, positive attitude, and busy social life.
After years of fighting for her life and not living it, Sara realized that she needed to live well with lupus rather than trying to fight against it. Sara began to prioritize living well and focusing on her well-being. Sara also has a line of fashionable pill organizers.
Lupus in Flight
Shaista Tayabali lives in the United Kingdom and was diagnosed with lupus when she was 18. She began blogging in 2009 to develop an online space to record her poetry.
After falling critically ill, Lupus in Flight became Shaista’s poetic response to living with a life-altering and challenging illness. Shaista says that her blog taught her how to be heard and how to be her own advocate. It also enables her to be imaginative while living a solitary life.
Recent posts on Lupus in Flight include an interview discussing life with autoimmunity between Shaista and her friend Colette, a reflection of Shaista’s day with PICC lines and penguins, and the day that Sleeping Beauty tried to escape the hospital.
Marisa Zeppieri is the founder of LupusChick. Marisa is a journalist and author, who launched LupusChick to empower individuals who are living with lupus or another autoimmune disease.
LupusChick offers services such as a blog, community, and forum, as well as coaching and membership packages. Marisa’s mission is to help people to live a vibrant and happy life despite chronic illness. LupusChick includes advice, recipes, humor, life hacks, and real-life stories.
The lupus and autoimmune blog features articles such as ways to manage lupus side effects and procedures, Suyim Edward’s lupus story, and how employers can help their employees who are living with chronic illness succeed in the workplace.
Molly’s Fund Fighting Lupus
Molly’s Fund Fighting Lupus is a nonprofit organization that has the goal of changing the way that the healthcare community, governmental agencies, pharmaceutical companies, the general public, and individuals who are living with lupus understand the condition.
They are dedicated to supporting those with lupus and have programs that are aimed at assisting people with lupus to receive an early diagnosis and immediate treatment.
Molly’s Fund Fighting Lupus blog includes topics such as using low-dose naltrexone and whether it is safe, what you should know about the Paleo and anti-inflammatory diet, and the benefits of exercise for individuals with lupus.
Lupus LA is a nonprofit organization that was founded in the year 2000 by families affected by lupus. They are dedicated to identifying the causes and finding a cure for lupus, while providing services and support to all those affected by the disease.
Lupus LA raises funds for providing patient services, supporting research, and promoting awareness and advocacy. They raise awareness through local, regional, and national media coverage and events.
Their Into the Loop blog is a useful source of information with posts such as tips for caregivers, questions to ask your doctor about lupus and your treatment plan, and how to manage stress when living with chronic disease.
Sometimes, it is Lupus
Iris Carden authors the blog Sometimes, it is Lupus. Iris is a former journalist and had to retire as a United Church minister through ill health. She has a bachelor’s degree in journalism and literature, as well as a master’s in theology.
Iris was diagnosed with lupus in 2006. Although she had experienced symptoms throughout her life, until then, doctors had not connected all the dots as being lupus. Through Sometimes, it is Lupus, Iris hopes to create awareness of the disease.
The latest posts on the blog include seeking help from an exercise physiologist to increase physical activity, acknowledging that on a bad day all you need to do is survive, and the realistic pain scale for people with lupus.
Lupus, the Adventure Between the Lines
An author known as the Lupus Adventurer writes the blog Lupus, the Adventure Between the Lines. She says that is hard to think of lupus as an adventure, but her experience with lupus has been just that, and it has been guided by the decisions and friends she has made along the way.
The Lupus Adventurer has many companions that have encouraged her lupus journey: her husband, children, grandchildren, extended family, physicians, nurses, co-workers, and friends. She says to “join the journey, and see where it goes.”
Recent posts on the blog include how the Lupus Adventurer lost weight when faced with rising blood pressure, the inertia effect of lupus and reclaiming a healthier lifestyle, and foggy lupus mornings after a bout of insomnia.
Getting Closer to Myself
Getting Closer to Myself shares Leslie’s experiences of living with multiple chronic illnesses and how she copes with them in a candid and sometimes humorous way. She hopes that by sharing her story, she can help others.
The blog tackles learning to love, live, and adapt to life with chronic illness with posts such as the dos and don’ts of pharmaceutical events, too rich to be sick or too cruel to be kind, and 10 things that a phlebotomist should never say.
Stacey is in her 40s, was diagnosed with lupus in 2005, and authors the blog Lupus Crazy. Until her diagnosis, Stacey felt crazy numerous times and questioned whether her symptoms were all in her head. After all, why was nothing showing during her doctor’s appointments or lab tests?
Receiving a lupus diagnosis gave Stacey enormous relief that she was not crazy, and she aims to reassure others that they are not crazy either. Lupus Crazy shares Stacey’s medical and life experiences and details her journey one blog post at a time.
Articles on the blog include how men can have lupus too, a gift of an all-expenses-paid mini vacation to the hospital from lupus, and three methods that can be used to reduce the pain of chronic disease.
Lupus Foundation of America
The Lupus Foundation of America is devoted to solving the mystery of lupus while supporting those who are impacted by the disease. Their mission is to provide programs of research, support, advocacy, and education to improve the lives of people affected by lupus.
The Lupus Foundation of America fundraises with the aim of reducing the time until a lupus diagnosis is reached, ensuring those with lupus have safe and effective treatments, and expanding services and increasing access to therapies and care.
Their blog offers lupus-related posts such as tips to improve concentration and improve lupus brain fog, how the Walk to End Lupus Now program helped Phil find hope after his lupus diagnosis, and guidance on sun safety for lupus.