A Lupus Fight

The month of May highlights awareness for many causes. Mental health, skin cancer and hypertension are few of the health awarenesses that the world is paying a little more attention to during the next few weeks. But this month also looks at the plight of people living with Lupus, an autoimmune disease with no cure. This week, Sabreena Daly sat down with Dejanira Thompson, Vice President of the Lupus and Rheumatoid Arthritis Association. She found out more about the illness and what the association is doing to provide the necessary support. Here’s that story.

 

Dejanira Thompson, Diagnosed with Lupus
“I remember my mom getting the call and she started crying and I was just ignorant to the fact that I’m like, well, yeah, it’s positive, but like so what? Like, I’ll just take the pills and I’ll be fine. And not knowing that a month from there, my whole life changed.”

 

Twenty-nine-year-old Dejanira Thompson recounts what it was like learning at the age of fourteen that she was diagnosed with Lupus, an autoimmune disease.

Dejanira Thompson
“My world was literally shifted upside down and I couldn’t eat the things that I wanted that I was used to. I couldn’t be in the sun. I couldn’t do a lot of things. There was a point where I couldn’t even get as excited for things because the emotions would trigger a flare up.”

 

The incurable medical condition takes various forms. For some, Lupus may be difficult to detect because of its asymptomatic presence. For others, Lupus is quite evident and manifests itself as an organ-eating disease that can be fatal.

 

Dr. Jorge Hidalgo, Internist

“The traditional presentation of lupus is when we go into the internet, we see the famous butterfly rash in the face, skin rashes, and pain in the joints. That is the, the, the most common, figure that we see on the internet. But unfortunately, lupus can be presented in, in a silent mode and, also difficult to diagnose sometimes. Sometimes we have a very atypical presentation of lupus that even takes a couple of years to actually confirm the diagnosis because the presentation is so atypical, you know? But lupus can range from asymptomatic conditions with minimal symptoms to something that can be really aggressive and can compromise a patient really badly.”

Dejanira Thompson

“There are three different types. They have the SLE, which is the skin condition; the systemic lupus, that’s internal, it affects all the organs. They have the discoid lupus, which is the skin one, and then they have the ones that affect the kidneys directly. I have two of those. I have the systemic one and the discoid, which is why I have a lot of scars  because of what happened in 2015.”

 

It’s been more than a decade since Thompson’s diagnosis. The worst of it was in 2015, when she fell into a coma that she has little memory of.

Dejanira Thompson
“In 2015 was the scariest one, I would say.  My lungs got affected. And I went into septic shock  that caused me to go into a coma for eight days.”

 

Sabreena Daly

“How old would you have been around this time?”

 

Dejanira Thompson
 “I was 20. That was in 2015. I was 20.”

 

Dr. Jorge Hidalgo

“She is a fighter. I’m really glad that she is in the state she is right now. But, she had some periods in the journey of lupus that was a really difficult time for her. She was even admitted into the ICU. She was in an induced medical coma because of complications of lupus. But I’m glad that the team of people that work in the ICU for her, We managed to help her.”

Dejanira Thompson

“I guess it’s so traumatic, and that is why I always say that I tie in lupus with mental health, because  it’s very important. I think it was so traumatic that my brain tries to protect me from remembering that, and so I vaguely remember it when people ask me were you in pain? I don’t remember being in pain.”

The Lupus and Rheumatoid Arthritis Association is an organization that’s seeking to spread awareness and support to the growing number of persons diagnosed and living with Lupus. The association has membership of almost one  hundred persons living with this autoimmune disease.  Six of seven executives are diagnosed with Lupus. President of the organization, Arlette Gomez shared why this should not be overlooked.

 

Arlette Gomez, President, Lupus and RA Association
“It is very concerning. And what is most concerning too, though, is that a lot of people, there are people walking around with it and not coming out and not. saying I have it, you know, it’s not a stigma. It’s not a shame. You, you are, you are battling something that is very debilitating and, uh, very mentally hard. So come let us help you.”

Dr. Jorge Hidalgo

“Lupus belongs to a condition that is also like rheumatoid arthritis. And these types of conditions are in the same category. And for Belize to be in a small country, the number of patients we see with lupus and all these rheumatological conditions is a lot.”

 

Sabreena Daly

“Is that concerning to you, doctor?”

Dr. Jorge Hidalgo

“Well, it’s a concern because, of course, there are many things. One is the ability to diagnose. Second, also some of the patients with lupus are required to be on medications, on several medications on a daily basis. Also sometimes, as I mentioned before, the condition can range from minimal symptoms to something very aggressive.”

 

Sabreena Daly

“Talk to me about why it was important for you to be a part of an association that advocates for persons to understand what lupus is, and of course, um, the support that is needed for persons battling with this.”

 

Dejanira Thompson

“So, I believe I’ve had it for 15 years.  I didn’t think nobody thought that I would survive that long if I’m being honest. And so if I can do it, others can. And that’s the whole point behind the association. That if we can do it, and not everybody has that support like I have in those members, right? And that’s what we want to offer. Let us get together. Hey, you’re not alone.  If this doesn’t work for you, let’s get you to the right person. Let’s get you the correct people that can donate. Cause we’re not, we’re not rich by any means, right? That is why we ask for donations. That is why we do these May activities to raise funds because the medications are very expensive.”

 

During the month of May, the association ramps up its campaign to spread awareness about Lupus and encourages supporters to give in any way that they can. May eighteenth is recognized as World Lupus Day and the association is asking the public to gather in Belize City and walk in support of persons fighting this illness.

Arlette Gomez

“We’re hoping to have that walk on the 18th of May. We usually walk in the evenings because the sun is not our friend. And so our walk usually starts at five in the evening, when the sun is about to go down. And we’re hoping to have that on the 18th of this month. Um, and it normally starts from the Civic Center and goes through downtown to Memorial Park. We ask people to buy the shirts, we ask, um, companies to encourage their staff to buy, or we ask, um, Companies to buy them for their staff and have them wear them on our pop day, uh, which is May 10th. And May 10th is also World Lupus Day. And then if the, if the, if the, um, companies buy the shirts for you, then, you know, you can give a small donation to the association.”

 

Looking on the Bright Side, I’m Sabreena Daly.