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Because we lost my Nan in September 2016 to Alzheimer's, I'd like to volunteer for the local Society
Topic. I was very close to Nan Rhodes, and was heartbroken when she died, only time I ever got mad with her was once when her and my Uncle were on a rant about people on long term benefits with no intention of working, and for obvious reasons I was a bit narked about this, they later apologised and said they didn't mean…
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International Paget's Awareness Day, how much do you know about the condition?
International Paget's Awareness Day 2021 is focusing on the important topic of treatment, its history and the research changing how Paget’s disease may be managed in the future. What is Paget's disease? Paget’s disease affects the normal repair and renewal process of bone. Throughout life, bone is renewed and repaired…
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Is labyrinthitis curable?
Is labyrinthitis curable? I have imbalances and problems with finding a job!
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Hi, my name is kazzie06! Do you know anything about Irlen Syndrome?
hi am new to this site was looking for a bit of info on irlers syndrome and it brought me to this site
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Fears and worries that come with having an undiagnosed/rare condition
I myself have many due to my condition slowly but constantly detreating over the years. Feel free to join the discussion and leave a comment below
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Charities/Organisations that offer support and advice to those with an undiagnosed or rare condition
I find the following pretty helpful so feel free to have a look. SWAN UK {Syndromes without a name Rare Disease UK Genetic Alliance UK
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Having an undiagnosed/rare condition can effect your mood and mental health
I have found that I can sometimes be really positive and happy about everything and then other times be feeling down and alone. As I have had my condition most of my life I have found ways to deal with my ever changing mood but it took me a while. Leave a comment below if you have a similar experience.
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Things that you may not know
Undiagnosed and Rare disease day each year is on April 29th There are 6,000 babies born each year in the UK with an undiagnosed or rare condition An undiagnosed condition can be a physical, invisible or intellectual Many people who are living with undiagnosed conditions often never get a diagnosis due to a lack of money…
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Chest problems
Hi to all This morning I felt OK after using my c pap machine last night for some of the night. Woke up wanting to make a day of it went shopping with my daughter to buy my grandchild birthday presants for tommorow we only went in 3 shops got home I was exhausted to say the least. Just don't understand why it's such an…
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Would anyone be interested in sharing your story on my page on Instagram?
If you have an "invisible illness" then I may be able to help you share your story and raise awareness. It can be a mental or physical illness that people can or can't see. If you are interested message me personally or comment below ❤️
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Paralympian Kadeena Cox talks about invisible impairments on IDPWD
Paralympian Kadeena Cox did an interview with ParalympicsGB for International Day of Persons with Disabilities. You can read the full interview here, but I've picked out the sections on what having an invisible impairment means to her, what challenges she's faced, and what advice she'd give to others. Can you relate to…
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I feel ignored/stigma
I feel completely ignored by my lecturer. I literally told him that chronic fatigue and referring to ME as chronic fatigue syndrome is problematic and seen as stigmatising by much of the patient community and activists. And also CFS and ME are beginning to be seen as different conditions altogether so it's not even…
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New diagnosis - advice wanted please.
Hello, in the last few days I have been diagnosed with absent epilepsy, I am still coming to terms with my new condition and trying to get used to my medication. My best friend has asked me, if I am with her and we’re near a road when I have an episode is she allowed to move me if she thinks I am unsafe? I understand that…
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Rheumatoid arthrhitis
Hi to all' I am a 58 year old lady I have just found out I have R. Arthritis but I am not allowed to stay on steroids as I have diabetes too I also get lots of fatigue if I don't sleep when I need 2 I have blown it as then I wake up like was tired earlier but I've woke up a bit now is this only me or not I have no energy…
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Understanding why a person with dementia may display distress behaviours. Part 2
Triggers may be a clue Pain The physical needs of people with dementia often get missed, not noticed or even mistaken for behaviours that are inappropriate, behaviours. Often unable to understand what the pain is or unable to communicate that they are in pain. The person banging their head against the wall because they…
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If only carers understood why a person with dementia displays distress behaviours.
It is fully recognised in the care that there are a growing number of people who now require support in one form or another. From family carer, domiciliary care providing home care to full nursing care in a specialised care home. As a part of this there are a growing number of people who are now being diagnosed with…
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POTS, B12 deficiency and undiagnosed illness
Hi, apologies on beforehand for a lenghty post! I'm a 23 year old female from Sweden, always been healthy, no health issues. About a year ago I started developing some symptoms of POTS - postural tachycardia, fatigue and palpitations but got no diagnosis. In february/march this year I started developing issues post-eating…
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Could you spot the signs of a brain tumour?
You might not know it but the 14th International Brain Tumour Awareness week is taking place all this week (24th to 31st October 2020). This event aims to make people more aware of the signs of brain tumours to know when a trip to the GP might be needed. This is more important than ever as the Cancer Research website tells…
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Dad has rare form of Melanoma
Morning. Apologies in advance for the long post. I don't know if this is the right place to post this. My dad has recently been diagnosed with a rare form of Melanoma. After having a blood test,3 X-rays,a chest CT Scan,an ebus and a CT Scan of his head,he's been diagnosed with Melanoma,Stage 4 which has spread to both…
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Find the Right Words - International Stammering Awareness Day
What is stammering? The charity Stamma had lots of useful information on what stammering is. What is it like to have a stammer? The physical act of stammering is only a small part of the experience of growing up with a stammer. Stamma aim to give people with stammers a platform to speak about their experiences. Stammering…
