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Experiences with
L-2-hydroxyglutaric aciduria
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Communities
8 public communities
L-W-O Community
166 members
Welcome to the L-W-O Community. We are a non-profit group set up in September 2013 for anyone who lives with lymphoedema or a lymphatic malformation. L-W-O is based in the UK, but we do have a global following. There is thought to be over 400,000 people in the UK living with lymphoedema. We are an established Community who provide non-medical tips and advice for our members. Lymphoedema takes a while to come to terms with, as you do, the more positive you can be about your condition then the easier it becomes to live with. Please remember that lymphoedema is manageable with the right treatment. L-W-O’s aim is: A community that brings people together for a common cause and shared interest in lymphoedema Promote self-care and positivity To encourage you to become your own advocate Share stories about the lives of those living with lymphoedema Share new research, campaigns and debates from the lymphoedema community Voice loud and clear - Lymphoedema exists, we exist
Foggy's "Invisible Illness" Support
5,569 members
With charitable donations, we are able to provide 2 Hydrotherapy sessions per week, for our paid members. We are dedicated to providing support, raising awareness and promoting positivity, for invisible conditions primarily for: Arthritic Condition's Chronic Fatigue Syndrome Chronic Widespread Pain Fibromyalgia Giant Cell Arteritis Long Covid M. E. Myalgic Encephalopathy Myofascial Pain Polymyalgia Rheumatic Condition's
AMN EASIER
1,314 members
AMN Easier was set up to help men and women who have adrenomyeloneuropathy (AMN) - to help make this disease a bit easier to live with. AMN EASIER provides information and support by (1) providing answers to health questions from other AMN patients with experience of the disease; (2) showing what other AMN patients are doing and thinking; (3) describing ideas and possibilities for therapies that could help
FABED
213 members
FABED was founded in 2005 by 2 families with a total of 5 Eosinophilic Children. We are a UK based non profit Charity who strive to raise funds to further the awareness, education and support for families and professionals who deal with Eosinophilic disorders on a daily basis. We feel it is essential for families living with these disorders to be able to access support and information to aid early diagnosis and the correct medical support.
Acid Reflux Support
1,625 members
For more than three decades, the OPA has fought against oesophageal and gastric cancers, raising awareness, supporting patients, caregivers and their families. Whether you are in the early stages or further along in your journey, the OPA is dedicated to offering support and guidance. Did you know? There are over 65 Million people in the UK and it is estimated that over 1 in 10 people suffer from Reflux Disease. Reflux disease can have a terrible impact on a patients quality of life affecting many aspects of their everyday functioning. For many people, this can be managed effectively with lifestyle changes and/or medication prescribed by their GP such as omeprazole, lansoprazole and esomeprazole (as well as others). However there are over 2 million people in the UK who do not respond effectively to this treatment and for these people, there are other options they can consider to treat their disease. Head to our website for more information - https://opa.org.uk/
Nutrition and Yoga for Health
1,385 members
Holistic health pioneer, yoga teacher and author, Ciara Jean Robert brings you this community. Her wish is to share with you helpful tools on your own unique journey. With a previous background in credit risk, banking, Ciara understands the stresses that can partner corporate life, She successfully transitioned 10 years ago to running her own business, Wholly Aligned. That transition was prompted by her precious first kidney transplant beginning to move through a rejection process and eventual failure. Using nutrition, yoga and inspiring story she has gathered through her own lived experience with her kidneys, she wishes to help you awaken your inner physician. Dwell in all possibilities. Ciara received the gift of a second kidney transplant in October 2019. And is currently embarked inward writing Book 2. Weaving in the incredible experiences of healing and integration, from the impact our words carry, to the influence the quality of breath has on how we feel, to hw a deeply embodied sense of being, is truly what opens up one's mind to the magic of life. Being alive. In sacred recalibration. She is a qualified Naturopathic Nutritional Therapist, a highly experienced yoga professional and writer. And also a big hearted human with an absolute love of life. Live your life each and every day. Dream big, live hopefully. Sign up to her mailing list and learn more on her website in the contact detail section.
Aspergillosis and Rare Fungal Infection Support
3,873 members
Serious fungal infections are very rare but also very under-diagnosed and that has several consequences. 1) There are many more cases than we currently know about 2) People who are diagnosed can be very isolated and benefit from community support This community is intended to address these issues by informing and educating people in the UK about serious fungal infections, what to look out for, how to get diagnosed and where the expert help is in the UK. We also feel that informing patients is a great way to support their medical teams. The National Aspergillosis Centre (www.nationalaspergillosiscentre.org.uk), currently based in Manchester is the main UK centre for the serious fungal infections caused by Aspergillus (see aspergillosis.org) and is where admin of this community is based, so we have all we need t to advise you on aspergillosis - maybe even get you a referral to this centre if warranted. This is also the site of the Mycology Reference Centre in Manchester (http://mrcm.org.uk/) which is a big skill base for the identification of all pathogenic fungi, consequently, we can support the diagnosis and treatment of other rare fungal diseases like cryptococcal meningitis, Candida bloodstream infection, Pneumocystis pneumonia and more. Note that we only support people who can use the UK NHS and only for questions and conversation about serious rare fungal infections and NOT the very common infections that you should be consulting your GP or pharmacist about - we cannot replace your relationship with your medical team but we may be able to help them help you. Any entries that seem to us to be better dealt with by your medical team first will be deleted. Any non-UK questions will also be deleted - sorry, but we are funded by the UK taxpayer and they have to come first!
Diabetes Research & Wellness Foundation
6,489 members
The Diabetes Research and Wellness Foundation (DRWF) is a registered charity, established in 1998 to raise public awareness to the condition and its associated complications, treatment, avoidance and relief and to provide support to people living with diabetes. Whilst funding vital diabetes research to establish the causes; develop improved management and treatment options; and ultimately find a cure, we aim to ensure that people have access to the right information and support to develop a proactive self-care approach to successful self-management, to ensure that they are ’staying well until a cure is found....’