Navigating Through the Teen Years with Lupus: Insights and Guidance

In a recent insightful podcast, (you can listen at: https://www.lupus.org/resources/the-expert-series-lupus-and-teens?utm_source=LupusFdn&utm_medium=email&utm_campaign=National_Newsletter_2023-10&utm_content=secondary_more ) Dr. Rubinstein, an expert in dealing with lupus, shared a wealth of information pertinent to teenagers navigating through life with this autoimmune disease. Dr. Rubinstein offered illuminating perspectives, not only on the medical aspects of lupus but also on the profound impact it can have on the lives, developmental stages, and future prospects of teenagers diagnosed with it. Teenagers, Young Adults, and Lupus: An Overview The podcast commenced by diving into the understanding of how lupus can affect teenagers versus adults. Dr. Rubinstein elaborated on the ages that generally define teenagers (13-19), acknowledging that sometimes young adults up to the age of 25, and pre-adolescents going through puberty, are often included in discussions related to the health and developmental challenges of teenagers. The pivotal points were:

• Age and Severity: Individuals diagnosed with lupus during childhood or early teenage years often experience a more severe form of the disease, with heightened risks of organ involvement, particularly in the kidneys and brain.

• Health Outcomes: The trajectory and outcomes of a young person's life—physically, emotionally, academically, and socially—can be significantly affected by an early diagnosis of lupus.

Differences in Treatment: Age vs. Organ Involvement Addressing the differences in treatment between teens and adults, Dr. Rubinstein noted that while the foundational treatment methods are quite similar, the age at diagnosis and severity do influence treatment plans and medication dosages. Medications like hydroxychloroquine, steroids, immunosuppressants, and supportive treatments like vitamin D and calcium supplements are utilized across all age spectrums. The critical part, especially for teenagers, is considering how these treatments interact with their developing bodies and minds, coupled with emerging adult issues like reproductive health. Emotional and Social Challenges: Beyond the Physical Impact A vital part of the conversation was understanding the emotional and social impact lupus can have on teenagers. Dr. Rubinstein identified three pivotal challenges:

1. Invisibility of the Disease: Lupus can, in some cases, be an “invisible” disease, meaning that the struggles and pain may not be readily apparent to others. Balancing personal health needs while wanting to fit in and not seem different from their peers presents a unique challenge to teens.

2. Treatment Burden: The physical and emotional burden of consistently managing the disease, adhering to medication regimes (some of which may have undesirable side effects), and attending numerous medical appointments with various specialists can be daunting and disruptive to their daily lives.

3. Unpredictability of the Disease: The flare-ups and recurrences of lupus can be unpredictable, potentially causing anxiety and stress as young individuals try to plan their lives while living with the constant concern of a potential flare.

Coping Strategies: Finding Stability Amidst the Chaos Addressing coping mechanisms, Dr. Rubinstein underscored the importance of stress relief techniques, which don't always mean formal mental healthcare. It could be everyday mindfulness and meditation practices, finding joy in little things, or practicing conscious breath control. Moreover, Dr. Rubinstein accentuated the importance of support, both from a patient community and healthcare providers. He encouraged teens to connect with others who are going through similar journeys to share experiences and coping strategies, as well as for emotional upliftment. A Teenager’s Standpoint In summarizing this podcast, it's essential to acknowledge the delicate balance that teenagers with lupus must maintain, navigating between managing a potentially severe and unpredictable disease, and simply wanting to enjoy their teenage years. This blog seeks to be a platform where experiences, advice, and stories can be shared to provide that crucial support and understanding to teens living with lupus. Understanding lupus is a journey, and for teenagers, it intertwines with the path of self-discovery, academic pursuits, and forming social relationships. With insights from experts like Dr. Rubinstein, a stronger, more informed community can be built, helping teenagers and their families navigate through these complexities with resilience and hope.

Managing Medical Aspects

With lupus often necessitating coordination among various healthcare providers, maintaining a comprehensive repository of vital medical information becomes imperative. Dr. Rubinstein suggests the utility of a 'cheat sheet' which encapsulates essential data like medications, allergies, lupus manifestations, and the medical journey thus far. However, due to the plethora of information, having it documented or stored in an easily accessible form, such as an app, ensures that crucial data is readily available when needed.

The Support Circle's Role

It’s paramount that the healthcare team understands the support structure around the teen. Knowing who aids in decision-making, daily management, and emotional support enables healthcare providers to communicate and involve them effectively in care plans.

Goals and Lupus Management

Understanding a teen’s life goals and aspirations allows healthcare professionals to align lupus management strategies effectively, ensuring they support rather than hinder these objectives.

Resource Availability

Navigating through the sea of online resources, Dr. Rubinstein points towards reliable platforms like the Lupus Foundation of America, providing a wealth of information and dedicated resources for teens and young adults. He also mentions smartphone tools, apps, and other organizations such as Lupus Chat and Take A Pain Check, aimed at offering both information and a support community for those dealing with lupus.

Balancing School Activities

Underscoring the importance of physical and social activities for holistic health, Dr. Rubinstein encourages participation in school activities, sports, and other extracurricular pursuits, acknowledging that modifications might be essential to accommodate each individual’s unique lupus management needs.

Transitioning to Adult Care

Dr. Rubinstein emphasizes the crucial role of adults, especially parents, in aiding teens to assume autonomy over their lives and healthcare management as they transition into adulthood and subsequently, adult care. He elucidates the varying facets of adult care, stressing the necessity for self-advocacy and adaptability amidst differing environments and practices.

In summation, the path that teens with lupus traverse is interwoven with unique challenges and adaptations. Dr. Rubinstein's insights delineate not only the medical management aspects but also highlight the importance of emotional, social, and logistical support from their circles, ensuring a more informed, holistic, and empathetic approach to managing lupus during these pivotal years. This thorough understanding enables caregivers and medical professionals alike to effectively assist teens in maneuvering through their lupus journey, ensuring it aligns with their aspirations and doesn’t impede their vibrant spirit.