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How personal alarms are helping people with invisible illnesses

In the UK, 13.3 million people live with hidden disabilities. What’s more, 96% of all illnesses are invisible.

Having an invisible illness or disability can be an isolating experience. And for those that are chronically ill, being told that you “look fine” is a common occurrence. 

From arthritis to ME, invisible illness comes in many forms. We spoke to three people about their rare conditions – and how personal alarms can help. 

Donna and fibromyalgia

Fibromyalgia is a long-term condition that causes pain all over the body. Anyone can develop the condition but it affects around 7 times as many women as men. 

Donna was diagnosed with the condition in 2013; she shares her experiences living with the condition on February Stars

“Imagine living in constant pain and feeling the exhaustion of the flu day-in-day-out. Not knowing if you are going to be able to manage daily living tasks, let alone anything else,” she said.

Most people think of personal alarms as a solution for the elderly. In fact, for Donna, it didn’t even cross her mind as an option. 

“There were many times when my health was poorer where I chose not to do something because I was home alone (e.g. going for a bath). I’d wait until my husband was home because it made me feel safer. Yet, it wasn’t always the best or most suitable time for me (in terms of how much energy I had). I can’t help but wonder if I would have been that bit more independent if I had the security of a personal alarm,” she said. 

Claire and dysautonomia

Claire suffers from dysautonomia; this affects the autonomic nervous system. She discusses living with the chronic illness on her blog: Through the Fibro Fog. Nicknamed “the fainting disease”, debilitating dizzy spells are just one of its many side effects. 

“While I am lucky enough not to have fainted in recent years (touch wood it stays that way!), I have many friends with the condition that do live with this being an aspect of their lives on a frequent basis or when symptoms flare. They often feel uncomfortable being home alone for this very reason,” she said. For Claire, the personal alarm can help those suffering from dysautonomia feel a little bit safer. 

“It can bring a sense of independence through the reassurance that there is always someone to speak to, on a 24/7 basis, if you have an accident or emergency at home and need help from a family member, friend or the emergency services,” she said.

Sophie and Ehlers-Danlos syndromes (EDS)

Ehlers-Danlos syndromes are a group of rare inherited conditions that affect connective tissue supporting the skin, tendons, ligaments, blood vessels, internal organs and bones. A group of rare inherited conditions, it’s reported that up to 1 in 5,000 people have EDS. 

Sophie is living with EDS and Postural tachycardia syndrome (PoTS); PoTS is a form of dysautonomia that’s most common in females aged 15 to 50. Speaking about the personal alarm, she said:

“I think it will come in very useful for us with POTS as it is waterproof and especially as personally I struggle with passing out in the shower it will be so handy to keep myself safe.”

Not just for the elderly, did you know that we have over 5000 customers under the age of 50? So whatever your age and situation, we can help you feel confident at home for longer. 

For more information about how a personal alarm could help, call 01323 644422. Alternatively, email: info@welbeing.org.uk

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