fbpx
Q&A Forum

Q&A Forum: How I Raise Lupus Awareness

Previous Article Next Article

Raising Lupus Awareness

Lupus Awareness Month is here! Living with lupus can be difficult and these next few weeks are important for educating others about these struggles.

For this month’s LupusCorner Q&A Forum, we asked our contributors to share their personal experiences regarding awareness and educating others about lupus.

humid

NaNa

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Sometimes an opportunity comes up in a casual conversation . Someone says ” I am really sweating today. This is really uncomfortable.” So, I may say” Sorry to hear that. This weather is unseasonably hot. I was reading an article that mentioned how people with Lupus have periods of uncomfortable sweating for no reason.” Usually that person will reply “Really ? I had no idea.”

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Sometimes it takes years for a person who has Lupus to be diagnosed with it.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

When you go into remission; do doctors then decide that maybe you just did not really have Lupus?
diabetes

Lisa

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

Post on my social media about the cause, my journey and events going on with Lupus Ontario.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Research on a systemic issue such a lupus aids in learnings and treatments for issues isolated to singular body parts, in addition to systemic issues. The scope of this research is vast in aiding people with so many issues.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

New research; upcoming drugs under review; mental health supports.
lupus

Anonymous Lupus Warrior

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

I explain to friends and family what it is.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

They should know that everyone with lupus experiences different symptoms.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

The type off research being done. Skin issues.

diabetes

Anonymous Lupus Warrior

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

I raise lupus awareness through my social media channels. Increased visibility of people with invisible illnesses, allows others to views us through a more compassionate lens.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

Although there have been major lupus advancements recently, there is still so much to learn about what causes lupus and what treatment options work best for each person. You can help scientists and researchers by participating in a clinical trial.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Funding treatment, ways to get involved, pairing new patients with those of us that have been diagnosed a while.
lupus

Danielle

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

I raise awareness for lupus using my social media platforms. I have a very nice Instagram following full of people that trust my authenticity and are always reaching out.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

I think the most important thing for when dealing with lupus is advocating for yourself or your loved one.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Holistic treatments.
diabetes

Charlene

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

I try to wear my lupus t-shirt ,and post on my page.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

How it effects your energy, and pain.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

What it can do to my skin.
hospital

Tina

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

I tell my story to anyone who wants to listen to it! It’s been a long road and I know many others have it much worse, but I won’t give up the fight!!

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

So many people have no clue what lupus even is! They think just because I don’t look sick, I should be able to do everything everyone else can. We need to make people aware of what Lupus does to the body.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Lupus and genetics.
quality-of-life

V

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

By writing poems and articles.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

That being empathetic about the disease is really important in addressing the issue.It may appear that the patient has mild symptoms-but if they are taking out their time and there very precious energy to reach out for help ,then it must be serious.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

How to manage depression and deal with the symptoms that take time to be diagnosed without giving up hope.
quality-of-life

Maria C.

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

I’m very reclusive so don’t do public awareness. But I made a big info sheet with cartoons and notes and pictures to go in the kitchen so anyone who visits, and my kids and grandchildren, can have a read and learn something, and remember it hasn’t gone away even if I’m OK that day.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

I think more practitioners should be taught about the emerging subtypes – including geographical differences – so they have a better understanding of the different types of presentations and don’t write patients off because they don’t fit a certain mould, and tailor treatment to fit better.

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

Early (first-stop) treatment/management for flares.
quality-of-life

Anonymous Lupus Warrior

Raising awareness can take many forms and can vary from person to person. How do you raise lupus awareness?

When I am out in public (which isn’t very often these days, honestly) and people who casually know me notice & ask me about things like my limp, swollen joints or lesions, I try to (in a sentence or two) give them an idea of what SLE is. Of course, when I was healthier, I used to have many more opportunities to spread awareness.

Education and research are two additional points of emphasis this month. What topics do you think others should know more about when it comes to lupus?

I think the majority of people I come across have no real idea what lupus is, the numerous symptoms related to it, the various types of lupus, that there is still no cure for it & so very few medications to specifically target lupus. I also don’t believe that most people realize how many suffer from lupus & the wide degree of severity from patient to patient (& from day to day).

Learning more about lupus can also extend to Lupus Warriors! What are some key topics that you would like to learn more about?

For 1: I would love to learn more about what current research is being done to determine the cause of systemic lupus. For 2: I feel like I still have more to learn about all the various symptoms that can be directly related to lupus.
hospital

Want to Share Your Lupus Story?

Send us an email us at: hello@lupuscorner.com.

Stay strong Lupus Warriors! You got this!

Comments (0)

Leave a Reply

Your email address will not be published.

Q&A Forum

Q&A Forum: Virtual Reality for Pain Relief?

Can virtual reality be used to treat lupus and lupus...

Living with Lupus

A Physician’s Journey With Lupus: Lessons I’ve Learned

A Physicians' Journey With Lupus: Niranjana Parthasarathi, M.D.  As an internal medicine...

Q&A Forum

Q&A Forum: What NOT To Say To Lupus Warriors

"Oh, you don't look sick!" or "It could be so much worse!" Many...