As a proud Lupus patient/warrior I love that I can easily “put on my purple bracelet” and know that I am a patient who, with the help of the MedicAlert Foundation, does what she can to empower myself.
Advocating for Lupus
For people like MedicAlert member and lupus advocate Amanda Greene, living with autoimmune conditions like lupus, how they feel from day to day can be unpredictable. Their health status can also change quickly and managing lupus can be challenging. And very often, the presence of their illness and its side effects aren’t visible to others. They may even hear the phrase, “But you don’t look sick!”
Because of this, many autoimmune conditions including lupus are often referred to as “invisible illnesses.” As you can imagine, this can cause challenges with everyday functioning. With the added worry to any medical emergencies that could happen. How will first responders know what to look for if they can’t see it?
Proud lupus advocate
As an active lupus advocate, MedicAlert member Amanda Greene is active with many groups and events like World Lupus Day. She joined us to explain why a medical ID is an important part of her plan to tackle lupus.
One of Amanda’s advocacy goals involves healthcare information sharing, “I am personally very concerned that despite advances in healthcare technology I am fighting for access to a comprehensive EMR (Electronic Medical Record) where my team of doctors are connected and that contains all my lab results and medication.”
Lupus flares can lead to serious health concerns. It’s important that anyone treating a medical emergency know a person’s complete treatment history related to lupus. Although electronic medical records can sometimes remain disconnected between hospitals and medical practices, a MedicAlert protection plan allows you to carry your information with you at all times, your digital health profile can be printed and your doctors to access the same up-to-date information.
Facts About
Lupus
Source: Lupus.ORG
Managing lupus and its flares
Part of this difficulty is caused by lupus flares, where symptoms come and go. As Amanda can attest, someone living with lupus may feel fine one day and have no symptoms, and then suddenly experience a flare. There are ways to manage these flares and reduce their severity. This is important because severe flares can damage organs in the body like the heart and kidneys.
There are many medications used to treat lupus. And specialized care is available to help with treating and managing the condition. Like all medications, these medications can have side effects and interact with other medications. It’s important that anyone providing medical care to a person living with lupus knows about a lupus diagnosis and any medications being used to treat it.
World Lupus Day
For Amanda, advocating for Lupus is important. That’s why every year, World Lupus Day she helps draws attention to lupus and its impacts on the more than 5 million people diagnosed worldwide, working to make this disease more visible and understood.
Connecting with peers can shed needed light
Amanda has found additional support for living with lupus by joining local lupus groups to find resources for lupus treatment as well as networking with other people who share the diagnosis. Such groups can also help one find ways to participate in advocacy events like World Lupus Day activities.
Amanda shares, “I live with lupus, and I’m an advocate for this condition. I have an online presence – known as L.A. Lupus Lady. I am honored that the MedicAlert Foundation has asked me to share a bit to celebrate World Lupus Day. As a woman who has lived with lupus for over three decades – I am passionate about a variety of healthcare issues.”
“As a proud Lupus patient/warrior I love that I can easily “put on my purple bracelet” and know that I am a patient who, with the help of the MedicAlert Foundation, does what she can to empower myself.“
The importance of MedicAlert for managing lupus
Amanda continued, “Having a purple MedicAlert bracelet has enabled me to confidently know that my complete list of doctors is all in one place. I have the security of knowing that in the event of a health crisis all my doctors are simply a phone call away. In addition, onsite health care professionals will have immediate access to contact and connect with my team of physicians.”
This peace of mind is also easy to personalize, she says. “It’s definitely a plus that there are many comfortable and fashionable designs to choose from, and as a proud lupus patient/warrior I love that I can easily “put on my purple bracelet” and know that I am a patient who, with the help of the MedicAlert Foundation, does what she can to empower myself.”
Amanda also loves that MedicAlert helps her be a lupus advocate and shared, “Wearing my MedicAlert Foundation bracelet is a conversation starter. I enjoy being stopped and told what a nice/great/super accessory it is. That’s all I need to start sharing my story of lupus and how the bracelet is much more than a fashion statement.”
What is lupus?
Autoimmune conditions like lupus are chronic and cause a person’s immune system to incorrectly attack healthy parts of the body. In lupus, the skin, joints, and internal organs are affected by inflammation. Symptoms include joint pain, extreme fatigue, and skin rashes.
There are many daily impacts of living with lupus. These include:
- Chronic pain- 65% of people with lupus report this is the hardest part of the diagnosis
- Fatigue and social interactions- 76% of people with lupus reduce their social activities due to fatigue
- Full-time employment- 89% of lupus patients say they cannot work full time
Want to learn more?
About Lupus
Learn more about this condition on the medical conditions page.
Read More >
Other Conditions
Read about other conditions that our MedicAlert members live with.
Read More >
