Rafael
Who is Gina Hessburg and, better yet, who is Rafael?
Gina Hessburg is an art buyer and producer (http://www.ginahessburg.com/). After suffering from multiple Optic Neuritis (ON)Inflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. attacks with the source undiagnosed. that took her to multiple clinics, including the Mayo Clinic. She was not responsive to steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child’s health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency), so doctors differ onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the diagnosed of Chronic Relapsing Inflamitory Optic NeuropathyDamage or dysfunction of one or more nerves that typically results in numbness, tingling, muscle weakness and pain in the affected area. , or CRIONA disease where the optic nerve is the target of two or more demyelinating attacks separated by at least 30 days, resulting in visual deficits and may or may not be accompanied by pain on eye movement. CRION patients may or may not be MOG antibody positive.. She tested negative for the MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. as well as every other known cause of ONInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. attacks. With no sure way to stop the continued degrading of her vision, Gina is determined to stop it from ever happening again and save her vision. In the process, she will help many more.
After several months isolated by COVID-19 social distancing, Rafael, a novelty toy from the past that she found in a drawer, entered into her life. With her third ON attack, Gina needed a project to focus onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. and was looking for ways to help push for more research in ONInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. and help a community in need. A few puffs of air and a little imagination led to a pretty remarkable series of opportunities that will surely have a positive impact on the ON community!
Gina, along with the support of her advertising community, is self-publishing a book called Blowing UP about her life with Rafael, with $5 of each book sale going towards ONInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. research and support. She has dedicated a portion of the funds raised to The MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Project. Read all about Rafael and Gina’s creative project below. Follow the links, sign up for the newsletter, and buy a book or two to help the cause. Feel free to share with a few friends. Have a laugh and help our community at the same time!
“Originally, I came from China. But I confess, I am Spanish. I would describe myself as light and bubbly; soft in the middle, but tenacious. My name, Rafael, specifically spelled with a F means ‘god of healing.’
I had traveled onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. several Minnesota cabin trips, mostly to scare people and once we went onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a trip to Mexico for a 40th birthday weekend; but recently I had spent most my life in a dresser drawer. I would say my real life began due to COVID-19. OnInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. March 21st, Gina reorganized a dresser and decided to put air back into me. That is when my personality truly blossomed. It seems I am more expressive in times of high stress.
At first, the isolated days Gina and I spent together were just silly. We cooked and organized a lot of virtual dance parties. And then Gina had her third optic neuritisInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. attack. Things got a little more serious. We hatched an idea to publish a book about me with five dollars of each book sale going toward optic neuritisInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. research and awareness.
We hate that it is an invisible disease and is often overlooked. While the cause of Gina’s reoccurring attacks remains undiagnosed, we are going to work to get the bottom of it and hopefully help others along the way. I have to keep Gina going—she is my air supply.
We are working on our book and making new friends in optic neuritis community. Because I am fantastic plastic, while Gina continues to isolate due to a compromised immune system, I get out into the world on her behalf. Together we are fighting to save people’s eyesight, because what else are you going to do in the middle of a pandemic?”
“My mission is to make people laugh, because laughter is really the best medicine. When going through medical challenges, life can feel heavy and as a blow-up doll I provide levity. I am mostly air.
I want to help people, so we are selling a book about our isolated covid life and its ups and downs.
The book will be available in September with five dollars from each book sale going toward optic neuritisInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. research and awareness. I am committing to giving 10% of all funds raised to The MOG Project (for MOG antibody diseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ).
In the meantime, you can follow my puffed-up life on Instagram @TheNextProjectIsMe”
Visit the website to learn more about Blowing Up and register for the email list for updates onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. pre-sales and the book release here:
https://www.blowinguprafael.com/
To learn about the book updates, go here:
http://www.ginahessburg.com/rafael
To see a PBS Segment onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the project:
https://www.pbs.org/video/introducing-gina-and-rafael-37870/
Gina’s Instagram:
https://www.instagram.com/thenextprojectisme/
Gina’s Facebook:
https://www.facebook.com/gina.hessburg/
Hashtags to follow: #blowinguprafael #ginaandtheblowupdoll #ginaandrafael