In a small Brazilian town, there resides an extraordinary duo of identical twins named Elis and Eloá. Their story serves as a beacon of resilience and the remarkable power of the human spirit. Afflicted with Hutchinson-Gilford Progeria Syndrome, a rare and fatal genetic disorder causing accelerated aging, these twins confront their adversities with remarkable grace and strength, earning admiration from people worldwide.
Understanding Hutchinson-Gilford Progeria syndrome
HGPS stands as an exceptionally rare disorder, impacting roughly 1 in 20 million newborns globally. Marked by rapid aging from early childhood, individuals with progeria often display growth delays, diminished body fat and hair, prematurely aged skin, joint stiffness, and severe cardiovascular issues. Typically, those with HGPS have an average life expectancy of about 14.5 years, though some may extend into their late teens or early twenties. This syndrome gained public attention through the film The Curious Case of Benjamin Button.
The condition is caused by a mutation in the LMNA gene, which produces the lamin A protein responsible for maintaining the structural integrity of the cell nucleus. The mutation results in the production of an abnormal version of the protein, called progerin, which causes cells to become unstable and die prematurely.
Elis and Eloá’s journey
Elis and Eloá swiftly captured attention because of their distinctive medical condition. Despite the physical hurdles imposed by progeria, their contagious smiles and steadfast optimism have emerged as beacons of hope and inspiration. Guilherme and Elismar, the twins’ parents, have dedicated their lives to offering the utmost care for their daughters, striving to ensure they experience as normal a life as feasible within the confines of their condition.
The family’s path has been far from easy. Their daily life is filled with demanding medical routines, including physiotherapy, aimed at addressing joint stiffness and preserving mobility. Despite these challenges, Elis and Eloá approach each day with remarkable bravery and an unparalleled enthusiasm for life, which is truly remarkable.
A global community of support
Elis and Eloá’s narrative has touched hearts worldwide, sparking a surge of solidarity from individuals and groups committed to promoting awareness about progeria and backing research endeavors. The Progeria Research Foundation, a pivotal entity in this realm, has played a vital role in propelling research forward and furnishing assistance to families grappling with the condition.
Through social media platforms, the twins’ journey is shared with a broad audience, fostering a sense of community and solidarity. Their family’s updates, documenting both the highs and lows of their daily lives, provide invaluable insights into the realities of living with progeria, while also spreading a message of hope and perseverance.
Advances in research and hope for the future
In recent years, there have been remarkable advancements in comprehending and addressing progeria. A notable milestone occurred in 2020 when the U.S. Food and Drug Administration (FDA) granted approval for the first progeria treatment: lonafarnib. This medication has demonstrated efficacy in prolonging the lives of children with progeria by mitigating the accumulation of progerin in cells, thereby decelerating the disease’s advancement.
Though a cure remains elusive, ongoing research presents promising prospects. Scientists are delving into gene-editing methodologies, like CRISPR, as potential means to rectify the genetic mutation at its root. For families such as Elis and Eloá’s, these breakthroughs offer a ray of hope for the future.
And in our other article, we recounted the remarkable story of a girl born without a nose, affectionately dubbed “Voldemort,” who refuses to let her differences define her.
Never heard of this before
It’s not uncommon for parents to be puzzled when their child mentions unusual sensations after eating a particular food. For instance, when a 6-year-old says their tongue feels itchy after eating strawberries, it can raise concerns and curiosity. While many people enjoy strawberries without any issues, some individuals, especially children, may experience discomfort. In this article, we explore why strawberries might cause an itchy sensation in the mouth and what it means for your child’s health.
The Science Behind Strawberry Reactions
When your child’s tongue itches after eating strawberries, it’s often linked to a condition known as Oral Allergy Syndrome (OAS). This occurs when the immune system mistakenly recognizes certain proteins in fruits and vegetables as harmful, similar to pollen allergens. The proteins in strawberries can trigger a mild allergic reaction in some individuals, causing symptoms like itching or tingling in the mouth, lips, or throat.
What is Oral Allergy Syndrome (OAS)?
Oral Allergy Syndrome typically manifests as itching, tingling, or swelling in the mouth, lips, tongue, or throat immediately after consuming raw fruits or vegetables. It is generally a mild and short-lived reaction, with symptoms often subsiding once the food is swallowed or removed from the mouth. However, it’s essential to monitor for signs of more severe reactions such as difficulty breathing, swallowing, or increased swelling, which may indicate a more serious allergy.
Why Are Children More Susceptible?
Children are more susceptible to Oral Allergy Syndrome due to their developing immune systems. Since their bodies are still learning to differentiate between harmful and harmless substances, they might have stronger reactions to certain foods. Additionally, children are exposed to a variety of new foods, which increases the likelihood of encountering one that triggers a reaction. This makes it especially important for parents to be aware of any unusual symptoms and react accordingly.
Video : Food Allergy vs. Oral Allergy Syndrome
The Role of Pollen-Fruit Cross-Reactivity
A crucial factor in Oral Allergy Syndrome is pollen-fruit cross-reactivity. Many fruits, including strawberries, share protein structures that resemble those of certain pollens. For instance, people allergic to birch pollen may react to strawberries because the proteins in both are quite similar. This phenomenon causes the immune system to mistakenly recognize the fruit as pollen, triggering the allergic response, including the itchy sensation in the mouth.
How Do Strawberries Trigger Oral Allergy Syndrome?
Strawberries contain proteins that mimic pollen allergens, especially in individuals who already suffer from pollen allergies. When these proteins come into contact with the oral mucosa (the tissue inside the mouth), the body’s immune system activates, leading to the symptoms associated with Oral Allergy Syndrome. Interestingly, cooking or processing strawberries often alters these proteins, reducing the chances of a reaction. Therefore, cooked strawberries may be less likely to trigger an allergic response compared to raw ones.
Allergies vs Sensitivities: What’s the Difference?
It’s important to distinguish between a true food allergy and a food sensitivity or intolerance. While Oral Allergy Syndrome is a mild form of allergy, it is not as severe as other food allergies that could lead to anaphylaxis (a severe, potentially life-threatening reaction). Sensitivities, on the other hand, don’t involve the immune system and usually result in digestive issues rather than oral symptoms. If you are unsure about the nature of your child’s reaction, consulting with an allergist can provide clarity.
Preventive Measures and Management Strategies
Managing symptoms of Oral Allergy Syndrome doesn’t have to be complicated. Here are a few tips to help prevent and control the reaction:
- Avoid Raw Strawberries: The best way to avoid an itchy tongue after eating strawberries is by skipping the raw ones. Cooking or processing the fruit can denature the proteins responsible for triggering the allergic reaction.
- Use a Food Diary: Keeping a food diary can help identify other foods that may trigger similar reactions. This can also assist in pinpointing when the symptoms are mild or severe, helping you manage your child’s diet better.
- Educate Your Child: Help your child understand their symptoms and avoid eating strawberries or other foods that might cause discomfort. Empowering them with this knowledge can make them more mindful of their food choices.
- Try Antihistamines: If symptoms occur, antihistamines can help alleviate the itching and discomfort. Always consult a healthcare provider before giving medication to your child.
When to Consult a Healthcare Professional
If your child experiences persistent or worsening symptoms, it’s crucial to seek professional advice. If the reaction seems severe or you notice difficulty breathing or swallowing, call emergency services immediately. An allergist can perform specific tests, such as skin prick tests or blood tests, to confirm the presence of allergies and provide guidance on how to manage the condition. If your child has a history of other allergies or asthma, professional guidance becomes even more critical.
Video : Medications to AVOID if allergic to strawberries
Conclusion: Navigating Strawberry Sensitivities with Care
Understanding why strawberries might cause an itchy tongue sensation in some children can help alleviate concerns and guide parents in managing food reactions. While Oral Allergy Syndrome is generally mild and manageable, being proactive and informed about potential triggers is essential. By consulting with healthcare professionals and educating your child, you can confidently navigate these food reactions, ensuring your child’s safety and comfort.
Empowering yourself with this knowledge will help you create an environment where your child can enjoy their meals without the worry of uncomfortable or severe allergic reactions.
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