Lupus is a chronic autoimmune disease where the immune system mistakenly attacks the body’s own tissues. This condition can cause a wide range of symptoms and affect multiple organs, leading to significant physical and emotional challenges for those diagnosed. In the United Kingdom, several organisations provide crucial support, information, and resources for patients, carers, and families. This article explores the key charities, support networks, and financial assistance programmes available to help manage life with lupus, drawing exclusively on information from official charity websites and recognised support platforms.
What is Lupus?
Lupus is a chronic autoimmune disease where the immune system is dysfunctional and mistakenly identifies the body’s own tissues as foreign invaders. In people with lupus, the immune system creates autoantibodies to attack the body’s tissues. These form immune complexes which cause inflammation and damage – possibly affecting the organs and/or the joints in some lupus patients. The disease is often described as misunderstood and invisible, impacting not just physical health but also emotional well-being and daily life. Patients may need to adjust to the demands of the illness and the impact of medication. While some people are severely afflicted, very many others, especially if careful for themselves, can live virtually normal lives. Emotional factors can contribute to flares, along with concern over the ability to keep in regular employment that will provide necessary income. There are times when the disease quietens or goes into a form of remission, but there is no certainty in this respect, and many patients are not conscious of any form of remission in their illness.
Key Support Charities in the UK
Lupus UK
Lupus UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. It is a vital resource for the UK lupus community, offering information, resources, and medical talks. The charity provides a free helpline, regional support groups, and an online forum with over 32,000 members. It also operates a grant programme for research and welfare.
Lupus UK strives to support the sufferer who may be alone and isolated, provide advice and welfare support, publish information on the disease, and make literature available from other sources. The charity publishes posters and publicity material and produces the national magazine News & Views. It arranges educational meetings and informs the medical and nursing professions on lupus, publicises lupus through the Press, Radio, and TV, magazine articles, and all other possible outlets. It promotes the annual October Lupus Awareness Month and awareness year-round, aims to increase its member base and income, and raises money for research and welfare support through national, regional, and local fundraising events. The charity also affiliates with other organisations to widen its audience’s reach.
For those seeking more information, Lupus UK offers a free Information Pack. The pack contains further information on the diagnosis of lupus and specifically the 11 internationally-agreed diagnostic criteria, as well as information about the charity’s regional structure and further publications on aspects of lupus and the work of Lupus UK. The pack is available at no charge to interested enquirers. To request it, individuals can contact Lupus UK by phone, post, or email. The charity notes that it receives no Government or Regional funding and has to fight alone to progress issues across a wide range of priorities.
Contact Details for Lupus UK: * Phone: (00 44) (0)1708 731251 (Monday to Friday, 9am to 5pm) * Post: LUPUS UK, St James House, Eastern Road, Romford, Essex RM1 3NH, England * Email: [email protected] * Online Forum: Health Unlocked (an online peer support forum with over 32,000 members)
The Hibbs Lupus Trust
The Hibbs Lupus Trust is a registered charity founded in 2011 by the Hibbs family, born out of a personal journey with lupus and a desire to create meaningful change. After witnessing the challenges faced by individuals living with this complex condition, the family set out to build a charity that would offer the support, understanding, and resources they felt were lacking. The trust aims to address the challenges of a misunderstood and often invisible illness, offering a lifeline of support to lupus patients and their families across the UK.
Since its inception, the trust has worked to provide accurate, accessible information about lupus, connecting individuals with the resources they need to navigate their diagnosis and treatment. It strives to foster a sense of community, creating safe spaces where people can share experiences, find encouragement, and build lasting connections with others who understand their journey. The trust’s work extends beyond direct support; by raising awareness of lupus among the public and medical professionals, it aims to promote earlier diagnoses and improve treatment outcomes.
Online Support and Community
For many patients, connecting with others who share similar experiences is a critical component of managing the condition. Health Unlocked hosts a dedicated Lupus Patients Understanding and Support community. This platform allows individuals to share experiences, ask for advice, and find peer support. The forum is a space where users can discuss a wide range of topics, from managing symptoms and seeking medical advice to coping with the emotional impact of the disease. For example, users have posted about seeking suggestions for next steps, discussing misdiagnosis or medical neglect, sharing experiences of living with the condition for many years, and looking for apps or tools to help manage energy levels and pacing. The community also provides a platform for those struggling with severe pain to seek advice on their next steps.
Financial Assistance and Support Resources
Living with lupus can place a significant strain on financial resources due to the cost of medical care, medications, and potential loss of income. While the provided sources focus on UK-based charities, one resource outlines general financial assistance programmes, primarily for the United States. It is important to note that this information may not be directly applicable to UK residents, but it highlights the types of support that exist in some regions.
The Lupus Foundation of America compiles a list of assistance programmes for health care, transportation, and other needs. For emergency food assistance, the resource suggests contacting organisations such as Feeding America (to find a local food bank), Ample Harvest (to find a food pantry), 211.org, and Findhelp.org. It also recommends contacting local churches, state, county, or city governments, your child’s school, and local service organisations.
For general assistance, the resource highlights 211, a free, confidential referral and information service that connects people in the U.S. and Canada to a specialist who can help find local health and human services, available 24 hours a day, seven days a week. In the UK, similar services may exist, but individuals should seek information from local authorities or national health service resources.
It is crucial for UK-based patients to seek financial assistance advice from UK-specific sources. Charities like Lupus UK may offer grants or welfare support as part of their programme. The Hibbs Lupus Trust also focuses on providing support and resources. Patients should directly contact these organisations to inquire about any available financial aid, grants, or support programmes specifically designed for the UK context.
The Importance of Awareness and Information
Both Lupus UK and The Hibbs Lupus Trust place a strong emphasis on raising awareness and providing accurate information. Lupus UK’s mission includes publicising lupus through various media outlets and promoting Lupus Awareness Month. The Hibbs Trust aims to raise awareness among the public and medical professionals to promote earlier diagnoses and improve treatment outcomes. Access to reliable information is fundamental for patients to understand their condition, manage symptoms, and make informed decisions about their care. The Information Pack offered by Lupus UK, which details diagnostic criteria and the charity’s work, is an example of a resource designed to empower patients and those close to them.
Conclusion
Managing lupus requires a multifaceted approach that encompasses medical treatment, emotional support, and practical assistance. In the UK, organisations like Lupus UK and The Hibbs Lupus Trust provide essential services, including information, community support, and advocacy. While direct financial assistance programmes may vary, these charities are central points of contact for guidance on welfare support and research funding. Patients and their families are encouraged to engage with these organisations, utilise their resources, and connect with peer support communities like the Health Unlocked forum to navigate the challenges of living with lupus. For the most current information on support services, grants, and assistance programmes, contacting the charities directly is the recommended course of action.