Epidermolysis Bullosa, also known as "butterfly disease," is a rare genetic condition. This congenital disease lets the skin be as fragile as those of butterfly wings. Affected patients can develop painful blisters and sores easily, proving life very difficult to live for all their daily activities. Though its prevalence is extremely rare, estimated to occur in 1 of each 50,000, the impact of this disease on children born with severe forms of the disease is immense.

Although the problems associated with butterfly disease are tremendous, there is a promise of improvement with advancements in gene therapy and other treatments. Research and innovations such as topical gene therapy are bringing new hope for the management of symptoms and possibly curative solutions in the future.

This article delves into the complexities of butterfly disease, including its causes, symptoms, and current developments in treatments, along with essential care tips for managing the condition.

What is Butterfly Disease?

Butterfly disease is a collection of very rare genetic conditions that cause severe skin fragility. Even the slightest pressure or friction from clothing, touch, or minor injuries can cause the skin to tear or blister. The blisters can occur anywhere on the body, including internally, such as in the mouth, gastrointestinal tract, and eyes.

Children with EB are sometimes referred to as "butterfly children" because their skin is fragile, just like the wings of a butterfly. In less severe cases, blisters may primarily occur on the hands, knees, or elbows. In the most severe cases, blistering can be all over the body, leading to scarring, deformities, and even life-threatening complications.

What causes Epidermolysis Bullosa?

EB, butterfly disease, originates from mutations that damage the structure of the skin. These mutations result in broken bonds between layers of the skin and cause separation at stress points. There are 30 different subtypes, but they all fit into one of four larger categories based on where the lesions affect the skin.

The most common subtype, epidermolysis bullosa simplex (EBS), accounts for about 70% of cases. It is typically inherited in an autosomal dominant pattern, meaning a single defective gene copy from one parent can cause the condition. Other, less common forms may require two defective gene copies—one from each parent—making them autosomal recessive.

Symptoms of Butterfly Disease

The symptoms of butterfly disease vary according to subtype and severity. Generally, all kinds of EB share the hallmark feature of fragile skin that blisters and tears easily.

• Blisters on hands, feet, and other pressure-prone areas.
• Scarring and thickened skin in areas prone to friction.
• Blisters can be found internally within the mouth and esophagus, impairing the ability to eat and digest food.

There are severe complications with the more severe forms of EB where blisters form in areas of the eyes, airway, and gastrointestinal tract. Such may lead to conditions such as:

Infections: Open sores are easily susceptible to bacterial infections that may eventually result in deadly sepsis.

Malnutrition and dehydration: Inability to eat due to blisters in the mouth and esophagus.

Risk of cancer: Squamous cell carcinoma is a skin cancer with an increased risk of development.

Life expectancy varies according to the severity. The milder forms of the disease tend to improve with age, while the severe types usually result in early death. Most patients die before reaching the age of 30 years.

Also Read: Smurf Syndrome: Rare Condition That Turns Your Skin Blue-Gray Permanently

Is there a Cure?

Currently, there is no cure for butterfly disease; however, the advancements recently done can offer a much better management system along with improved quality of life.

Gene Therapy

In 2023, the FDA approved a revolutionary gene therapy gel called Vyjuvek. This gel targets dystrophic epidermolysis bullosa, a severe subtype caused by mutations in the gene responsible for producing a crucial type of collagen in the skin. Vyjuvek helps heal wounds and prevent further damage by delivering functional copies of the gene directly to affected cells.

• Another remarkable advancement is in developing this gene therapy into an eye drop for vision restoration in EB-related eye scarring.

Other Treatments Involve

• Filsuvez Gel: It is an FDA-approved birch bark gel used to facilitate wound healing in specific subtypes of EB.
• Supportive Care: Pain management, blister drainage, and nonadhesive bandages all contribute to relieving symptoms.

For severe patients, complications may necessitate surgery, including correction of esophageal strictures or deformity due to scar tissue.

Essential Tips for At-Home Care

Caring for butterfly disease needs a lot of attention to prevent complications and ease pain.

• Non-adhesive dressings on the wound with some loose gauze on it.
• Wear loose-fitting, tagless clothes to reduce friction.
• Speak with your doctor about the proper methods to drain blisters safely, to avoid infections.
• Steer clear of heat and moisture; make the environment as cool as possible and bath at room temperature.
• Many patients have deficiencies in iron, selenium, and vitamin D. Consult a nutritionist for suggestions of foods that have these nutrients in them to boost overall health.
• For any of these signs to be red, warm, and pus-filled, seek medical attention as soon as possible if infection is suspected.

Trial of Beremagene Geperpavec (B-VEC) for Dystrophic Epidermolysis Bullosa. New England Journal of Medicine. 2022

Sometimes serious health issues fail to get recognized due to their simple symptoms. Many times, things as simple as a persistent cough, or a fever, can end up being a sign of a concerning health issue. Since we deal with these issues on a daily basis, people often do not get them checked out by a doctor; instead, they choose to stay home and recuperate.

However, having information about the same goes a long way. Experts explain these symptoms and issues to people on various platforms, like social media or governmental portals. One such warning was issued by the National Health Service, England (NHS) about a common warning sign, that many people experience after eating.

NHS says this feeling of ‘heartburn’ could actually be one of the "least-recognised" signs that someone might have cancer. What's concerning is that a large majority of people in Britain, around 79% according to their findings, would not even think that this particular symptom could be a signal of a deadly disease growing inside their body. This lack of awareness means that crucial early warning signs could be easily overlooked, potentially delaying diagnosis and treatment, which can have serious consequences for the outcome of the illness.

Heartburn Could Be A Serious Concern

A new survey that was carried out by NHS England revealed a worrying trend: many of the initial warning signs that could point towards cancer are being easily missed by the general public. One of the key examples they highlighted is heartburn and indigestion. These are feelings that a lot of people experience from time to time, often as a result of eating too much, eating their food too quickly, or consuming certain types of foods that don't agree with them.

However, the NHS experts are emphasizing that heartburn that persists for a period of three weeks or even longer could be an early indication of oesophageal cancer. This is a particularly dangerous form of cancer that sadly leads to the deaths of around 8,000 people in the United Kingdom every single year, making early detection absolutely vital for improving survival rates.

Recognizing Changed Signs

To get a better understanding of what the public knows about cancer symptoms, NHS England conducted a survey that involved a significant number of people, around 2,000 individuals in total. The results of this survey were quite revealing. They found that heartburn, specifically heartburn that lasts for three weeks or more, was the cancer symptom that people were least likely to recognize as a potential warning sign.

Eight out of every ten people who were surveyed, which translates to 79% of the participants, did not identify this persistent heartburn as something that could possibly indicate cancer. However, heartburn wasn't the only symptom that wasn't widely recognized. The survey also showed that more than half of the people didn't recognize blood in their urine (even if it happened just once), nearly half didn't recognize unexplained weight loss, and over four in ten people didn't recognize an unexplained lump anywhere on their body as a potential sign of cancer.

Signs You Should Not Ignore

NHS England advises contacting your doctor if you notice any of the following: lumps, changes in moles, blood in poo or pee, unusual bleeding, a cough lasting three weeks or more, mouth sores that don't heal, tummy trouble, unexplained tiredness, ongoing heartburn, unusual poo, unexplained pain, or bloating.

Other less common signs of oesophageal cancer include trouble swallowing, feeling sick, a persistent cough, a hoarse voice, loss of appetite or weight loss without trying, tiredness, throat or chest pain when swallowing, and black poo or coughing up blood.

When Todd Engel, based in Maryland, first noticed a change in his vision, he did not think it would change the rest of his life. However, within months, the 62-year-old went from working a full-time job and driving to becoming legally blind in both eyes. Now, Engel is suing Novo Nordisk, the manufacturer of Ozempic - the drug he believes took away his vision.

An Irreversible Loss

Engel was prescribed Ozempic in 2023 to help manage his type 2 diabetes. After four months later, he was diagnosed with nonarthritic anterior ischemic optic neuropathy (NAION). It is a rare condition where blood flow to the optic nerve is blocked and causes sudden and irreversible vision loss.

"He made a comment to me about how it’s painful to know he’s never going to see his wife smile again," said Engel’s attorney Jonathan Orent, who spoke to NBC News. "But he knows her voice so well, he can tell when she is smiling."

As per the American Academy of Ophthalmology, NAION affects about 10 in every 100,000 people over the age of 50. For Engel, the diagnosis meant that he no longer would work his job as a motor equipment operator. He also lost his ability to drive and the way he connects with his family.

What Does His Lawsuit Allege?

Filed in New Jersey’s Middlesex County Superior Court, the lawsuit accuses Novo Nordisk of negligence, alleging the pharmaceutical giant failed to properly warn users about the potential risk of NAION. Engel's legal team argues that the company was aware of the condition during early clinical trials but still chose not to include it in the warning label.

“Nothing was or is stopping Defendant from adding a warning regarding the risk of NAION,” the lawsuit states.

Had Engel known about a potential link between Ozempic and blindness, Orent said, he would have chosen a different medication. “There are a wide number of medications that can be used to treat diabetes — and treat it effectively,” Orent said to NBC News.

What Do Research Say About Ozempic And Blindness?

Ozempic, and its active ingredient semaglutide, is part of a class of drugs known as GLP-1 receptor agonists, initially designed to treat Type 2 diabetes but now widely used for weight loss. Recent studies have hinted at a possible link between semaglutide and NAION — though causation hasn’t been confirmed.

A 2024 study which analyzed six years of medical records from Boston patients found that people with diabetes who took semglutide were four times more likely to be diagnosed with NAION.

Even more striking, overweight or obese people without diabetes who took the drug were over seven times more likely to be diagnosed with NAION.

However, researchers noted this study wasn’t a randomized clinical trial and said more investigation is needed before drawing conclusions.

In February 2024, a separate paper published in JAMA Ophthalmology reported a more modest increase in the risk of NAION for people with diabetes on Ozempic. Like the earlier study, it also stressed the need for further research.

What Do The Manufacturers Say?

Novo Nordisk's spokeperson told the NBC News that current evaluations, including internal safety reviews and a study from the University of Southern Denmark found no causal relationship between NAION and Ozempic.

The company said that NAION is not listed as an adverse drug reaction. “This also relates to eye conditions, which are well-known comorbidities for people living with diabetes,” the spokesperson said.

Ever thought those weekend binges, skipped workouts, or stress-fueled all-nighters in your 20s wouldn't matter later? Think again. The truth is, those early habits don’t just fade—they follow you. And by your 30s, they often come knocking in the form of low energy, poor sleep, creeping weight, or even anxiety. But here’s the good news: small, healthy choices now can completely rewrite that story. Ready to see how your everyday habits are shaping your future health? Let’s dive in.

It turns out the consequences of your twenties don't just haunt your social media feed—they may be silently impacting your long-term health well before you reach middle age. A groundbreaking study published in the Annals of Medicine has revealed that bad habits such as smoking, excessive alcohol consumption, and physical inactivity begin taking a measurable toll on mental and physical health by the age of 36.

This research, led by Finnish scientists and conducted over the course of more than 30 years, offers one of the most comprehensive glimpses yet into how unhealthy lifestyle choices in early adulthood accelerate aging and disease risks, and perhaps more crucially, when exactly those effects begin to show.

Why 36 Is a Wake-Up Call for Health?

While much of previous research has focused on health deterioration starting in midlife, the new longitudinal study flips the script by starting earlier. Scientists from Finland followed over 300 individuals born in 1959 in the city of Jyväskylä from childhood into their early 60s. Health assessments were conducted at ages 27, 36, 42, 50, and 61, offering an unparalleled timeline of how unhealthy behaviors impact wellbeing over decades.

The researchers found that even by age 36—what many consider still "young adulthood"—participants who consistently smoked, drank heavily, and exercised infrequently already showed notable declines in both mental and physical health. This suggests that the damage doesn’t start in your 40s or 50s. It begins much earlier, and once set in motion, it compounds.

Measurable Impact of Risky Habits

The three behaviors monitored—smoking, heavy alcohol use (defined as over 875 units/year for women and 1,250 for men), and exercising less than once a week—were assessed alongside health outcomes like depressive symptoms, psychological well-being, self-rated health, and a metabolic risk score that measured blood pressure, waist size, cholesterol, blood sugar, and other markers.

Dr. Tiia Kekäläinen, lead author of the study and a health scientist at Laurea University in Finland, emphasized the urgency of early intervention. “Our findings highlight the importance of tackling risky health behaviours as early as possible to prevent damage from building up over the years,” she explained.

Unhealthy Habits Are Interconnected

One of the most compelling insights from the study is the recognition that the relationship between poor habits and poor health is likely two-way. A person under chronic stress may turn to drinking or smoking to cope, leading to more health issues, which in turn worsen stress and mental health—a vicious cycle.

This echoes similar findings from large-scale studies, such as the ongoing Nurses' Health Study and the Health Professionals Follow-up Study, conducted by the Harvard T.H. Chan School of Public Health. These studies emphasize the interconnected nature of diet, physical activity, and mental wellbeing across decades of life.

Not Just Physical, Mental Health Pays the Price Too

Interestingly, the study separated out which habits affected which aspects of health the most. Smoking was most closely tied to poor mental health outcomes, while lack of exercise impacted physical health most significantly. Heavy drinking, perhaps unsurprisingly, was associated with declines in both mental and physical wellbeing.

This finding is particularly relevant in a post-pandemic world where mental health concerns are on the rise among younger adults, and alcohol use among Americans has increased significantly, especially among women and young professionals.

Are Millennials and Gen Z At High Risk?

Though the data primarily pertains to individuals born in the late 1950s and early 1960s, researchers caution that its findings are still broadly applicable. However, younger generations may face different lifestyle risks—such as increased screen time, vaping, and dietary imbalances—that weren't as prevalent in earlier cohorts. Therefore, the health impact timeline could shift, but the underlying message remains: the earlier you adopt healthier behaviors, the better.

High-profile figures like Adele, Rupert Grint, and A$AP Rocky—all around the age of 36—have publicly grappled with smoking and drinking. Adele, who quit smoking at 23, cited concerns about her vocal cords. Rupert Grint revealed he gave up smoking when his daughter was born in 2020. These personal transformations reflect a growing awareness among public figures of the need to shift lifestyle habits before long-term damage becomes irreversible.

How to Build A Healthy Lifestyle?

Perhaps the most hopeful message from the study is that change is possible. Dr. Kekäläinen reiterates: “It is never too late to change to healthier habits. Adopting healthier habits in midlife also has benefits for older age.”

So, what are the takeaways for someone nearing or in their 30s?

• Begin exercising regularly—even once a week has a measurable benefit
• Reduce or quit smoking as soon as possible
• Practice moderation in alcohol consumption
• Seek mental health support when experiencing stress or depressive symptoms
• Maintain regular health check-ups to monitor metabolic indicators

Your 30s aren't just about career milestones or starting a family—they're a crucial checkpoint for your health journey. The choices you make today will echo through your 40s, 50s, and beyond.