The strength of PurpleMiguel Major Jr. diagnosed with lupus at age 20
Lupus can affect people of all ages, however, women of childbearing ages, 15 to 44 years, are at greatest risk. Men are at a lower risk, but Miguel Major Jr., 25, found himself among that lower risk group, diagnosed with the chronic autoimmune disease at age 20.
“It was rough,” he recalled of the lupus in 2013 that sent him to the hospital to seek medical care. “I was experiencing joint pains, headaches, coughing up blood, hair loss … I pretty much barely couldn’t stand.”
Over the course of two months he was administered a battery of tests for a number of diseases that he said were all returned negative. With no definitive answer from medical officials locally, Major sought answers in the United States. With his medical record in tow, he said he was diagnosed with lupus within 30 minutes of having seen a medical official.
“From the symptoms that were showing within the records they were like they think it’s lupus, but when they did the blood samples, they said it was lupus,” said Major.
The disease can damage any part of the body — skin, joints, and/or organs. In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs.
Minority and ethnic groups, including blacks/African Americans, Hispanics/Latinos, Asians, and American Indians/Alaska Natives, are affected more than whites.
Prior to his diagnosis, he had known of the disease, but hadn’t educated himself on it and what it was. After his diagnosis, he threw himself into educating himself about lupus.
Within the first year of diagnosis, Major said he experienced a flare every four to five months. In his case, the lupus attacks his platelets, unlike other sufferers whose other organs are battered by the disease.
But the worst experience he said was his hair loss, with a mixture of joint pains. He said the hair loss for him was excruciating as it got to a point where he got sores in his head, and had to seek treatment abroad for them as well.
Lupus can range from mild to life threatening. With good medical care, most people with lupus can lead a full life.
When he was initially diagnosed, it wasn’t something he readily shared with anyone.
“After a while I started to become comfortable with it. In all honesty I don’t accept the disease, but it’s there. I can’t say I don’t have it and don’t take the medication, because it will affect you.”
In an effort to help his son, his dad, Miguel Major Sr., took to the Internet to do research and came across local support group Lupus 242 on Facebook. He told his son to contact them to see what the group was about. He did and said he found them welcoming, and that he also grew attached to the group through attending their monthly support meetings.
What surprised Miguel Jr. was the fact that there weren’t any other males in the group, and since he joined he said he has remained the only male member.
Lupus 242 was originally the idea of Debbie Humes who got very sick and was unable to pursue the idea of putting the group together. In 2011-2012, deceased Lupus 242 president Shanelle Brennen experienced a rough bout with the disease that put her out of work for almost six months. She then decided to get the group up and running. They launched in April 2012 with Brennen as president and her younger sister Shonalee King Johnson, who does not have the disease, as the vice president and public relations coordinator of the group.
Brennen wanted to start the support group so that fellow sufferers did not feel alone, and to let them know they had support. She felt that a lot of people suffered in silence and came up with the theme, ‘Breaking the Silence, Supporting the Cure’, which is their motto. The group has regular meetings and provides education. She wanted it to be such that someone who was on the other side of a lupus experience could speak to it.
Major who was initially hesitant to speak about his diagnosis, says he speaks out now, to help other sufferers, particularly males who may have been diagnosed.
“Who knows, my story may touch the life of someone out there and maybe they’ll come forward. I’m hoping my story actually reaches someone, a male in particular so that they can come forward and speak up and get that support they deserve,” he said.
As he wages his own war against lupus, Major said he lives a normal life. And he encourages anyone that’s been diagnosed to do research.
As Lupus Awareness Month is observed, he said he wanted to share his story as it could possibly help someone, particularly a fellow male to come forward.
Commemorated globally, Lupus Awareness Month serves to draw attention to the impact that lupus has on people worldwide. The annual observance focuses on the need for improved patient healthcare services, increased research into the causes of and cure for lupus, earlier diagnosis and treatment of lupus, and better epidemiological data on lupus globally. World Lupus Day, which was celebrated on Thursday, May 10, serves to rally lupus organizations and people affected by the disease around the world to embrace the common purpose of bringing greater attention and resources to efforts to end the suffering caused by the disabling and potentially fatal autoimmune disease.
Friday, May 18 worldwide is Put on Purple Day, during which people are encouraged to wear purple and donate, in an easy way to help expand awareness, raise funds for lupus research, and show support for those living with the disease. Lupus 242 encourages Bahamians to put on purple each Friday during May in support of lupus awareness.
LUPUS 242 CALENDAR OF EVENTS
Friday, May 18 and 24: POP For Lupus. Each Friday, put on purple for Lupus Awareness. T-shirts are on sale
Monday, May 21 (Whit Monday Holiday): Hope Floats Memory Ceremony/Ribbon Formation at 9 a.m., Fort Charlotte. (We have opted to remove the balloon release portion of the ceremony in exchange for a more environmentally friendly way to remember those who have died from lupus. In addition to reading poems and calling the names of persons who have passed, we will form a lupus ribbon using volunteers and our members.)
Saturday, May 26: Health talk with rheumatologist Dr. K. Neil Parker at the University of The Bahamas at 12 noon; health screenings will be done
To support the cause, and for more information about the group, persons can contact 525 9967, www.facebook.com/lupus242, firstname.lastname@example.org.