Listen to “Hispanic Heritage Month (September 15th – October 15th) THE IMPORTANCE OF ACTING EARLY WHEN LIVING WITH LUPUS” on Spreaker.

Hispanic Heritage Month (September 15th – October 15th)

THE IMPORTANCE OF ACTING EARLY WHEN LIVING WITH LUPUS
Recognizing the Disproportionate Impacts of Lupus on Hispanic and Latinx Communities

Women of color are disproportionately affected by systemic lupus erythematosus (SLE), the most common form of lupus. SLE is a chronic, inflammatory disease that can result in permanent damage to major organs.[1] Notably, it is estimated that 21 percent of those living with lupus in the U.S. are Hispanic.[2] Patients of color, including Hispanic people living with SLE, also have significantly higher rates of lupus nephritis (LN), a potentially life-threatening complication of lupus, compared to White patients.2

Hispanic and Latinx individuals may also face distinct challenges that can impact access to healthcare that may make managing the disease even more difficult, such as language barriers.[3],[4]

Fortunately, early intervention with the use of FDA-approved medications can help reduce the risk of organ damage progression.[5]

In honor of Hispanic Heritage Month, on Tuesday, September 24, Guillermo Valenzuela, M.D. is available to discuss the effect of lupus on the Hispanic and Latinx communities. Dr. Valenzuela, who is the Medical Director of the Internal Rheumatology and Immunology Specialists medical center, can also discuss the unique challenges these communities face and the importance of early disease intervention.

Interview is courtesy: GSK

#hispanicheritagemonth #actingearly #livingwithlupus #lupus

The post Hispanic Heritage Month (September 15th – October 15th) THE IMPORTANCE OF ACTING EARLY WHEN LIVING WITH LUPUS appeared first on Good News!.

A New Documentary

THE EMOTIONAL JOURNEY OF HOW A FAMILY

TURNED THE CHALLENGES OF THEIR TEENAGE SON’S RARE DISEASE INTO A MISSION FOR RAISING AWARENESS

Clinton Moore – a devoted father and tireless advocate for his son, who lives with a rare disease called cystinosis – is on a mission to help bring awareness to the condition that has affected his son’s life and impacted his family to its core.

In a new documentary that recently premiered, Moore describes when his son was first diagnosed with cystinosis, and how difficult it was to accept the doctor’s conclusion. A rare disease diagnosis wasn’t the answer he wanted, but he soon came to understand it.

Cystinosis is a rare genetic disease that results in an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain. Symptoms usually appear early in a child’s first year of life, and it’s a lifelong disease. Cystine accumulation can lead to kidney failure, muscle wasting, swallowing difficulty, diabetes, and hypothyroidism, among other issues. Without treatment, children with cystinosis will usually develop end stage kidney failure or die prematurely.

Moore says since cystinosis never stops, so neither does he. In the film, he explains that giving up hope means you’ve completely given up, so he won’t allow that to happen. In a heartwarming moment in the film, Moore explains how amazed he is that his son has chosen to be as happy as he is each day, considering all his challenges. Part of his son’s daily routine includes a regimen of dozens of pills and eye drops every waking hour.

Moore has been doing all he can to bring attention to the disease. In the documentary, Moore can be seen completing a 57-mile walk within 24 hours, dedicated to bringing awareness and support to the cystinosis community.

He believes more awareness about the disease is crucial in helping to raise money for research and he won’t stop doing all he can until a cure is found. Moore’s passion has moved him from being a parent on the sideline not thinking he could make a difference, to the president of the Cystinosis research Network (CRN) the longest standing active non-profit supporting cystinosis families worldwide.

One in 10 Americans are affected by a rare disease, so it’s important to bring attention to the issues surrounding them. Also noteworthy is the fact that many treatments developed for rare diseases have been repurposed, which is the identification and application of already approved drugs to treat new diseases.

Clinton Moore, patient advocate and CRN president, will be available to talk about the documentary, the organization CRN, the disease and how to support those afflicted with the cystinosis.

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