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Hi, I'm diane01! I'm struggling with menopause symptoms, can anyone help?
Struggling just found out i've got this fnd & suffering with menopause to finding it hard to take meds as they seem to make me feel like im fitting really had nervous every day with it picking my lip smoking no end & twirling my hair & spasms twitches over tiredness shaking legs jerking in sleep & lack of memory…
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Has anyone had : mesenteric angio, coeliac ad sma stenting ?
I was told by my general surgeon what I had was rare and life threatening. Within 2 weeks I had surgery this was in November 2020 I have not seen or spoke to anyone about it but I am curious. Thanks
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Tic Advice
Hello, i’m new to this so go easy? I’m actually writing for my 11 year son.When he was 5 he first developed a blinking tic, we ignored it and it lasted about a week then went away. Over the years he has developed clearing of the throat tic, another couple of blinking episodes but never lasted more then a couple of weeks…
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Life-long mental health issue that progressively gets worse
Hello. I have been struggling with an undiagnosed mental illness for potentially my whole life. It has progressively worsened and no doctor has been able to help me. Here is a brief outline of my symptoms: • Indescribable feeling of semi-consciousness. o Over the years my description of this has evolved. Originally, I…
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Lymphodema
Does anyone else here suffer and live with this painfull swelling in legs and feet ?
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Skin condition distress
I didn't know what to put this down in. Had a very stressful appointment with dermatologist. I wish to speak to someone who similarly gas had a very bad experience with doctors, with something where errors were obviously made and know the psychological distress that can cause. I am looking for people who can understand…
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Waiting for ENT and scared
Hi, I'm 27 and last year around Sept I was told I have premature hearing loss and Pulsatile tinnitus so I was referred to ENT. well for the past couple of months I've had a headache every at the front of the head or above an eyebrow, and the tinnitus has become constant and so much louder! Most sounds seem to make the…
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Have you been denied a Blue Badge for your hidden impairment?
A journalist is looking to speak to a person with a hidden impairment who has applied for a Blue Badge, but was denied it. He would like to know how this has impacted your life, and hear about your Blue Badge story. If this is something you've experienced, and you're interested in sharing your story, please send an email…
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Epilepsy, would anyone mind telling me how it feels to have a fit?
My son was born with a rare neuro cutaneous syndrome which left him with bi lateral malformation of the face, moderate to severe learning difficulties and epilepsy. When he was born I remember trying to convince medical staff that the noises and jerking movements were not wind.. took a couple of days to get someone to…
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Agoraphobia
(I hope i'm writing this in the correct category) I don't ever tell anybody about my mental health issues - only my very closest friends know and even then, they don't actually have a clue what my illness is. Not their fault, it's just an uncommon one i guess. I suppose i'm writing this to ask if anybody else suffers from…
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Hi, I'm jan47! My sister is on her own with no support from social services. She has Alzheimer's
Need help with my sister on her own as my brother is in hospital . She has Alzheimer’s. No support from social services x
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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…