A Latina’s Powerful Story Raises Awareness of HoFH, a Serious, Rare, Genetic Cholesterol Condition 

A Latina’s Powerful Story Raises Awareness of HoFH, a Genetic Disorder Impacting 1 in 270 Latinos 

Sponsored by Regeneron Pharmaceuticals, Inc.

Carolina’s life unfolds as a powerful narrative of enduring a relentless genetic affliction. Diagnosed with homozygous familial hypercholesterolemia (HoFH) as an infant in Venezuela, she has faced an ongoing battle with this condition her entire life.  

HoFH is an ultra-rare inherited genetic disorder, according to the National Organization for Rare Disorders. The condition occurs in roughly 1 in 250,000 individuals when two copies of genes typically associated with familial hypercholesterolemia (FH) are inherited—one from each parent. This is a concern for Latino families, as 1 in every 270 Latinos has FH. HoFH can lead to exceptionally high levels of low-density lipoprotein cholesterol (or LDL-C, sometimes referred to as “bad cholesterol”), often upwards of 400 mg/dL (< 100 mg/dL is considered a desirable level for LDL-C).  

In a candid conversation with BELatina, Carolina offers a profound account of her struggles, shining a light on the critical need for heightened awareness within the Latino community. 

Carolina: A Latina Living with HoFH

Carolina’s early years were marked by the health challenges of her family. Her mother’s own battle with high cholesterol set the stage for Carolina’s struggle. Despite their best efforts to manage the condition with strict dietary controls, Carolina’s health deteriorated—at one point she weighed 98 pounds but had a total cholesterol of 1000 mg/dL.   

Carolina recalls how challenging it was to participate in some of her favorite aspects of Latino culture. Family would gather for dinner, but she wasn’t able to eat what everybody else was eating. Fellow students would go out to party and dance, but for her it triggered chest pain so she was unable to join. 

The severity of her symptoms, including frequent chest pain and fatigue, eventually led to her passing out on the way to class in university and later ending up in the ICU, culminating in a quintuple coronary bypass. This surgery was a turning point, revealing a new perspective on the fragility and value of life. “Life is good!” she reflects – a mantra she now uses that emerged from her profound experiences. 

The journey continued as Carolina moved from Venezuela to Europe, where she navigated personal milestones amid ongoing health challenges, including more surgeries to address carotid blockages and issues with her heart valves. Marriage and the birth of her son brought both joy and renewed concerns about her condition. Despite using multiple treatments, her cholesterol remained high and her struggle persisted.  

Clinical Trial Brings Hope

In 2018, a significant breakthrough came when she joined a clinical trial for evinacumab-dgnb, an LDL-C-lowering drug that worked differently than other LDL lowering medicines, that was approved as EVKEEZA® in February 2021. 

EVKEEZA is an FDA-approved angiopoietin-like 3 (ANGPTL3) inhibitor treatment used with other LDL-C lowering medicines for children as young as five years old to lower extremely high levels of LDL-C caused by HoFH. During the clinical trial, Carolina began receiving EVKEEZA infusions and experienced a substantial reduction in her LDL-C level. 

Select Important Safety Information 

EVKEEZA can cause side effects including allergic reactions (including a severe reaction known as anaphylaxis), symptoms of the common cold, flu-like symptoms, dizziness, pain in the arms or legs, nausea, decreased energy levels and feeling tired or weak. 

Please see additional Important Safety Information below and click here for full Prescribing Information. 

Now residing in Florida, Carolina’s life is characterized by a delicate balance between her health and her personal aspirations. The support of her family and a dedicated medical team has been instrumental in managing her condition.  

Her story reflects the complexities of living with HoFH as well as serving as a critical call to pay attention to your health and the health of your loved ones. By sharing her experiences, Carolina aims to raise awareness of HoFH within the Latino community and encourage families and children with a positive family history for FH or very high LDL-C levels to ask their healthcare provider about HoFH screening and care. 

Today, Carolina is filled with the desire to see her son flourish and to enjoy life’s simple pleasures. Her journey is a compelling narrative of confronting adversity and striving for a better future. Through her advocacy and personal story, Carolina contributes to a broader understanding of HoFH, offering hope and encouragement to those facing similar challenges. Being a Latina, it’s no surprise that her determination to overcome so many obstacles was never deterred. May her story be one of hope for others in the Latino community undergoing similar situations.   

INDICATION 

EVKEEZA is an injectable prescription medicine used along with other low-density lipoprotein (LDL) lowering medicines in people 5 years of age and older with a type of high cholesterol called homozygous familial hypercholesterolemia (HoFH). 

It is not known if EVKEEZA is safe and effective in people with other causes of high cholesterol. The effect of EVKEEZA on heart problems such as heart attacks, stroke, or death is not known. It is not known if EVKEEZA is safe and effective in children with HoFH under 5 years of age. 

IMPORTANT SAFETY INFORMATION 

Do not use EVKEEZA if you are allergic to evinacumab-dgnb or to any of the ingredients in EVKEEZA. 

Before receiving EVKEEZA, tell your healthcare provider about all of your medical conditions, including if you: 

  • Are pregnant or plan to become pregnant. EVKEEZA may harm your unborn baby. Tell your healthcare provider if you become pregnant while using EVKEEZA. People who are able to become pregnant: 
  • Your healthcare provider may do a pregnancy test before you start treatment with EVKEEZA 
  • You should use an effective method of birth control during treatment and for at least  5 months after the last dose of EVKEEZA. Talk with your healthcare provider about birth control methods that you can use during this time. 
  • Are breastfeeding or plan to breastfeed. It is not known if EVKEEZA passes into your breast milk. You and your healthcare provider should decide if you will receive EVKEEZA or breastfeed. 

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. 

EVKEEZA can cause serious side effects, including: 

  • Allergic reactions (hypersensitivity), including a severe reaction known as anaphylaxis. Tell your healthcare provider right away if you get any of the following symptoms: swelling (mainly of the lips, tongue or throat which makes it difficult to swallow or breathe), breathing problems or wheezing, feeling dizzy or fainting, rash, hives, and itching. 

The most common side effects of EVKEEZA include symptoms of the common cold, flu-like symptoms, dizziness, pain in legs or arms, nausea, decreased energy and feeling tired or weak. 

Tell your healthcare provider if you have any side effect that bothers you or does not go away. These are not all the possible side effects of EVKEEZA. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. 

Please see fullPrescribing Information, including Patient Information. 

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