TikToker Hannah Campbell's 10-month-old daughter passes away due to THIS rare skin disorder

Social media influencer Hannah Campbell is grieving a great loss.

The TikTok star recently took to social media to share the devastating news of her daughter’s tragic death. Elliana ‘Ellie’ Rose was just 10 months old.

On April 8, Hannah posted a TikTok video sharing the shocking news, revealing that her daughter had breathed her last the night before.


"In loving memory of Ellie," Campbell wrote alongside a video posted to her TikTok. "Our sweet girl Elliana Rose lost her battle last night. She passed peacefully, wrapped in love."

In the caption of her announcement post, Campbell continued to grieve her late infant, writing, "I don’t know what to do with myself today. I’m heartbroken, and I’m angry. No child should have to endure what she did.” She lamented, “EB stole her from us. Let’s fight for a cure so no other family has to feel this. Thank you for loving her with us."


What did Ellie die of?

Hannah revealed that her 10-month-old daughter died battling junctional epidermolysis bullosa (JEB), a rare condition that causes fragile, blistering skin.

Campbell created a post that broke down the differences between types, though made known that JEB "is brutal" no matter the type. She wrote, "Severe JEB often takes lives way too soon, and even the 'milder' form still causes daily pain, wounds and lifelong challenges. There is no cure, but there is hope. Every child with EB deserves a future without pain. Spreading awareness leads to research, treatments and one day a cure."


Campbell has so far chronicled her daughter's journey of life with junctional epidermolysis bullosa on her TikTok, sharing videos of her little one's day-to-day while also educating over 700,000 followers about the rare condition.

In her daughter Ellie’s case, Hannah shared that her care involved "constant wound care, special medical supplies and adaptive equipment to keep her comfortable and safe." apart from that, nebulizer treatments, offering her small amounts of liquids frequently, humidifiers, electrolytes, alternating Tylenol and Ibuprofen, and Pedialyte in a syringe were just a few of the methods Campbell shared to help support her daughter.

Along with sharing Ellie’s journey via TikTok, Campbell started "Elliana's Hope for Healing," a fundraiser organized with the intent of providing support to their daughter and other babies facing similar health conditions. Their goal is to cure EB by 2030 and pioneer a path for the 400M battling the rare disease.


What is junctional epidermolysis bullosa (JEB)?

Junctional epidermolysis bullosa (JEB) is a rare, inherited skin disorder characterized by blistering and skin fragility due to mutations in genes that affect the proteins responsible for holding the skin layers together, specifically at the lamina lucida level of the basement membrane zone.



Cause:

Junctional epidermolysis bullosa (JEB) is a genetic disorder caused by mutations in genes that encode proteins crucial for skin adhesion, specifically laminin-332, type XVII collagen, or integrin α6β4, leading to skin fragility and blistering.

Genetic Basis:

JEB is an inherited condition, meaning it's caused by a mutation (a change in the DNA sequence) in one of the genes responsible for producing the proteins that hold the skin layers together.

Affected Genes:

The most common genes involved in JEB are:

LAMA3, LAMB3, and LAMC2: These genes provide instructions for making the subunits of laminin-332, a protein that helps attach the epidermis (outer layer of skin) to the dermis (underlying layer).

COL17A1: This gene provides instructions for making type XVII collagen, another protein that plays a role in skin adhesion.

ITGA6 and ITGB4: These genes encode the subunits of integrin α6β4, a protein that also helps in skin adhesion.

Inheritance Pattern: JEB is typically inherited in an autosomal recessive manner, meaning that a person needs to inherit two copies of the mutated gene (one from each parent) to develop the condition.

Consequences of Mutations: When these genes are mutated, the proteins they produce are either missing or don't function properly, leading to weakened skin and an increased risk of blistering and skin separation.


Types:

There are two main types of JEB:

JEB generalized severe (formerly Herlitz JEB): The more severe form, with blistering present at birth or shortly after, affecting large areas of the body and mucous membranes.

JEB generalized intermediate (formerly non-Herlitz JEB): A milder form with blistering that may be localized to certain areas, such as hands, feet, knees, and elbows.



Symptoms:

Blistering and skin erosions, especially with minor trauma or friction.

Blistering can occur on the skin and mucous membranes (lining of the mouth, digestive tract, etc.).

In severe cases, blistering can lead to scarring, granulation tissue formation, and complications like difficulty eating and digesting food.

Other features may include congenital localized absence of skin (aplasia cutis congenita), milia, nail dystrophy, and scarring alopecia.


Treatment: Currently, there is no cure for JEB, but treatments focus on managing symptoms, preventing infections, and providing supportive care. This includes careful wound care, pain management, and addressing nutritional and other systemic issues.

Skin Care and Blister Management:

Gentle Handling: Avoid friction and trauma to the skin.

Blister Management: Lancing and draining new blisters to prevent enlargement and infection.

Wound Care: Using non-stick dressings and specialized bandages to aid healing and prevent infection.

Protective Measures: Wearing soft, loose-fitting clothing and avoiding adhesive tapes.

Nutritional Support:

Addressing Nutritional Deficiencies: Providing adequate calories, protein, and essential nutrients to support skin healing and overall health.

Feeding Support: Gastrostomy tubes may be necessary in severe cases to ensure adequate nutrition.

Pain Management:

Addressing Pain: Using appropriate pain relief measures, which may include medications, to manage the pain associated with blisters and wounds.

Infection Prevention:

Wound Care: Thorough wound care to prevent infections.

Antibiotics and Antiseptics: Using antibiotics and antiseptics as needed to treat infections.

Multidisciplinary Approach:

Teamwork: Involving a multidisciplinary team of specialists (dermatologists, surgeons, nurses, etc.) to ensure comprehensive care.

Addressing Systemic Complications:

Fluid and Electrolyte Balance: Monitoring and managing fluid and electrolyte balance, especially in severely affected infants.

Other Complications: Addressing other potential complications, such as respiratory issues, gastroesophageal disease, and urologic/renal problems.

Emerging Therapies:

Gene Therapy: Research is ongoing into gene therapy approaches to address the underlying genetic causes of JEB.

Vyjuvek: Vyjuvek, a topical gene therapy, was approved by the FDA in 2023 for the treatment of dystrophic epidermolysis bullosa (DEB), a related condition.

Other Therapies: Other experimental therapies, such as cell therapies and protein replacement therapies, are also being explored.