My Journey With HS, From Adolescence To Adulthood
Please note NiYondashay is a COSENTYX® (secukinumab) patient and has been compensated for her time. Continue reading for Important Safety Information and a link to the full Prescribing Information and Medication Guide.
Although NiYondashay now makes an active effort to speak openly about her life with hidradenitis suppurativa (HS), she still remembers how isolating it was to develop the condition as a teenager on the verge of starting high school. “I was very closed off,” she recalls. “I didn’t want to speak about it. It was almost like I was in a bubble.”
HS is a chronic and often painful skin disease that can cause recurring boil-like abscesses, which can burst into open wounds and may cause irreversible scarring. For NiYondashay, it was an arduous journey to receive an accurate diagnosis and find a treatment plan that worked for her.
My Condition Was A Frustrating Mystery
At the age of 14, NiYondashay noticed what seemed to be a cluster of small blackheads underneath her underarms. While seemingly innocuous at first, the blackheads gradually worsened, turning into painful cysts and boils that frequently filled with pus and blood, requiring professional draining. Each time she sought medical help, she was told that her problems may be hygiene-related. “I saw multiple primary care providers, hoping that somebody could tell me what the problem was,” NiYondashay recalls. Over and over again, she received the same advice: “This will go away if you keep up with your personal hygiene.”
But NiYondashay was prioritizing her hygiene, and yet her symptoms still persisted—and even worsened. Her teenage life, characterized by a burgeoning interest in engineering, family time, and hanging out with friends, was altered. “I had low energy. I wasn’t functioning like normal,” she remembers. “The pain restricted my movement at times and made sleep difficult.” She relied on a host of holistic measures throughout high school to manage her symptoms, including hot and cold compresses, turmeric masks, and constant wound care. But without an accurate diagnosis, she was always playing catch-up to manage her symptoms after they presented, instead of treating the cause.
After multiple visits with primary care doctors, NiYondashay was eventually referred to a dermatologist, who identified her symptoms as evidence of a systemic disease—meaning a condition that impacts multiple body systems. At the end of the appointment, NiYondashay, who was 18 years old at the time, finally received an accurate diagnosis: hidradenitis suppurativa.
Receiving A Diagnosis Was A Relief
HS is a chronic condition that can develop anywhere on the body, but is most common in areas where skin meets skin, like the groin, inner thighs, buttocks, under the breasts, and in the armpits. The variability in its presentation, combined with a widespread lack of awareness about the condition, makes it all too common for patients to go long stretches of time without an accurate diagnosis, particularly among patients of color. “Common misdiagnoses include acne, razor burn, folliculitis, and STDs,” says Jennifer Hsiao, MD, a dermatologist based in Los Angeles.* “This can take a toll on patients’ lives, both physically and emotionally.”
As HS is a progressive condition—which, Dr. Hsiao explains, means “it tends to worsen over time if it’s not adequately treated”—it’s important to receive an accurate diagnosis as soon as possible. But for many, this can take as long as a decade. So when NiYondashay was able to put a name to her condition, it was a breakthrough moment that set her on the path to managing her condition: “It was a relief,” she says. “Let’s build on this, I thought.”
Finding A Treatment Is A Personal Journey
Diagnosis was only the first step of NiYondashay’s journey toward condition management. In the years that followed, she pursued a series of different treatment methods—par for the course for HS patients. “Most HS treatment plans are multimodal, or a combination of different therapies,” says Dr. Hsiao. Treatments can include lifestyle modification, hormonal and metabolic medications, antibiotics, biologics (a medication that is made from living sources and taken by injection), and surgical procedures.
At first, nothing NiYondashay tried was providing the consistency that she wished for. When her dermatologist suggested that she consider biologic treatments, she did her own independent research and agreed that a biologic treatment was worth considering. “For patients with moderate to severe HS, biologics are a cornerstone of my management approach,” says Dr. Hsiao.
NiYondashay worked with her dermatologist to develop a treatment plan that worked for her, which included COSENTYX® (secukinumab), a biologic treatment option approved by the FDA for adults with moderate to severe HS. COSENTYX treats HS from within by inhibiting interleukin-17A, a protein believed to play a role in the inflammation leading to HS symptoms. Now on treatment, NiYondashay has been able to better manage her HS symptoms.
Here’s What I Hope Others Learn From My Story
With her HS now managed, NiYondashay has made it a priority to spread awareness of the condition to both other HS patients and the broader medical community. “I’m more vocal about my HS now,” she says. “It’s amazing to talk about it and help other people with HS realize that ‘it’s not just me’ with this condition, even though it can feel that way.” Looking forward, she wants HS patients to have the resources and support they need to have effective conversations with their doctor and hopefully find a treatment plan that works for them.
To learn more about COSENTYX, visit cosentyx.com.
*Dr. Jennifer Hsiao has been compensated for her time on this article and is a paid consultant for other projects of Novartis Pharmaceuticals Corporation, makers of COSENTYX.
INDICATION
COSENTYX® (secukinumab) is a prescription medicine used to treat adults with moderate to severe hidradenitis suppurativa (HS).
IMPORTANT SAFETY INFORMATION
Do not use COSENTYX if you have had a severe allergic reaction to secukinumab or any of the other ingredients in COSENTYX. See the Medication Guide for a complete list of ingredients.
What is the most important information I should know about COSENTYX?
COSENTYX is a medicine that affects your immune system. COSENTYX may increase your risk of having serious side effects such as:
Infections
COSENTYX may lower the ability of your immune system to fight infections and may increase your risk of infections. Some people have had serious infections while taking COSENTYX, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses. Some people have died from these infections.
Your doctor should check you for TB before starting treatment with COSENTYX.
If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with COSENTYX and during treatment with COSENTYX.
Your doctor should watch you closely for signs and symptoms of TB during treatment with COSENTYX. Do not use COSENTYX if you have an active TB infection.
Before starting COSENTYX, tell your doctor if you:
are being treated for an infection
have an infection that does not go away or that keeps coming back
have TB or have been in close contact with someone with TB
think you have an infection or have symptoms of an infection such as: fevers, sweats, or chills; muscle aches; cough; shortness of breath; blood in your phlegm; weight loss; warm, red, or painful skin or sores on your body; diarrhea or stomach pain; burning when you urinate or urinate more often than normal.
After starting COSENTYX, call your doctor right away if you have any signs of infection listed above. Do not use COSENTYX if you have any signs of infection unless you are instructed to by your doctor.
What are the possible side effects of COSENTYX?
COSENTYX may cause serious side effects, including:
Serious allergic reactions
Serious allergic reactions can occur. Get emergency medical help right away if you get any of the following symptoms: feeling faint; swelling of your face, eyelids, lips, mouth, tongue, or throat; trouble breathing or throat tightness; chest tightness; skin rash or hives (red, itchy bumps).
If you have a severe allergic reaction, do not give another injection of COSENTYX.
Inflammatory bowel disease
New cases of inflammatory bowel disease or “flare-ups” can happen with COSENTYX, and can sometimes be serious. If you have inflammatory bowel disease (ulcerative colitis or Crohn’s disease), tell your doctor if you have worsening disease symptoms during treatment with COSENTYX or develop new symptoms of stomach pain or diarrhea.
Severe skin reactions that look like eczema can happen during treatment with COSENTYX from days to months after your first dose and can sometimes lead to hospitalization. Your doctor may temporarily stop treatment with COSENTYX if you develop severe skin reactions. Tell your doctor if you have any of the following signs or symptoms: redness or rash; itching; small bumps or patches; your skin is dry or feels like leather; blisters on the hands or feet that ooze or become crusty or skin peeling.
The most common side effects of COSENTYX include: cold symptoms, diarrhea, and upper respiratory tract infections.
These are not all of the possible side effects of COSENTYX. Call your doctor for medical advice about side effects.
Before using COSENTYX, tell your doctor if you:
have any of the conditions or symptoms listed above for infections.
have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
are allergic to latex. The needle cap on the COSENTYX Sensoready® pen and 150 mg/mL and 75 mg/0.5 mL prefilled syringes contains latex.
have recently received or are scheduled to receive an immunization (vaccine). People who take COSENTYX should not receive live vaccines. Children should be brought up to date with all vaccines before starting COSENTYX.
have any other medical conditions and all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Keep a list of your medicines to show your healthcare provider and pharmacist when you get a new medicine.
are pregnant or plan to become pregnant. It is not known if COSENTYX can harm your unborn baby. You and your doctor should decide if you will use COSENTYX.
are breastfeeding or plan to breastfeed. It is not known if COSENTYX passes into your breast milk.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please see full Prescribing Information, including Medication Guide.
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