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Help with complaint when Ombudsman does nothing
Complained about poor service from two hospitals and the health service overall with respect to a skin condition or parasite/thing that came from a dodgy seller of Amazon marketplace. I complained as they still haven't treated it after 9 years and didn't even do a skin biopsy to establish what it is. The report from the…
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COLD autoimmune haemolytic anaemia
Hi - I have recently been diagnosed with a condition that is relatively uncommon and I don't seem to be able to find any peer group support. I wondered is aware of any groups for people with COLD autoimmune haemolytic anaemia.
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Femoral Facial Syndrome
Hi. My name is Joel, I'm 19 and I have a rare condition called Femoral Hypoplasia-Unusual Facies Syndrome (FHUFS). It means that my femors (upper leg bones) are very short. I also have a load of other symptoms because it's a syndrome. These include club feet, fingers that don't straighten, small ears, cleft palette and…
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Achenbach Syndrome
Apologies, I didn’t realise I posted this on someone else thread. Diagnosed with Achenbach Syndrome presents on my hands and toes, starts with a burning heat that itches and feels like I’ve been stung then a bruise appears which can last from 4 hours to 3 days. Told by consultant not a lot known about it, there’s no…
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Functional vomiting syndrome
Hi there I'm just wondering if there is anyone else who suffers from this rare condition, I've had it for 7 years now often vomiting upto 20 times aday with no warning when an episode starts.ive had lots of scans and seen a few specialists and still get no where.ive been diagnosed with this but dealing with it is hard
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hEDS
Hi, I'm new here and I have Hypermobile Ehlers Danlos Syndrome (hEDS) amongst a multitude of other things. Does anyone have any advice regarding getting medical support from a GP? I've had a lot of medical gaslighting and accusations of being a hypochondriac in the past but I've recently moved house and hoping to start a…
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Hi, my name is ema! cvs syndrome, surgeon isnt willing to perform weight loss surgery.
Hi I have cvs syndrome was down to get weight lose surgery but I've been told by surgery he's neaver heard of this and isn't willing to do surgery just woundering if anyone has had this problem.
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Chronic Fatigue Syndrome/M.E
Hello everyone I have the awful disability known as Chronic Fatigue Syndrome/M.E I have recently been awarded LCWRA for ESA and in a couple of weeks got a PIP assessment which I’m so nervous about anyone else experienced this assessment and if so any useful tips available, don’t the benefits system make you feel your doing…
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Looking for disabled friends
Hi. My name is Mischa and I am 57. I have diabetic peripheral neuropathy which affects my arms, hands, legs and feet. I live daily with chronic pain. As I have an invisible illness able bodied people don’t understand and I am struggling with my mental health due to isolation, being housebound and in constant pain. I need a…
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If you suspect a relative has an eating disorder
An eating disorder. How can you support them? All I am managing to do is suggest they see their gp, they haven't done that. This is two years on. So what else can you do? They don't think anything is wrong medically, but they are really fussy about eating, things upset their stomach, they have already eaten lunch etc.…
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Spinal stenosis
Hi everyone, I am 53 years old with spinal stenosis, I have discs going in the c section of spine but worse is lumbar area. It affects my daily life quite bad but so far the NHS won't do anymore except keep me on medication. It's a daily struggle which has left me suffering clinical depression and insomnia for past 5 years.
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Anyone with fibromyalgia?
Hello my name is Maria and I have fibromyalgia & CFS. Is there anyone on here with fibromyalgia?
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Apert Syndrome support needed. Who do I speak to?
Hello, My daughter suffers from Apert Syndrome and she is only 3 years old, and we are from Iraq Baghdad, and it is impossible to cure her in my country due to the lack of health services. Could you advise me to whom I have to apply or what country or charity accepts her to be cured?
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Hi, my name is Stillfighting! Does anyone have an understanding of Myasthenia Gravis?
Hi, I've just joined as I'm keen to find others who are caring for a loved one and to hear from anyone with an understanding of Myasthenia Gravis. My daughter is 16 and has developed severe symptoms recently and is on an urgent neurology waiting list (that doesn't seem to be very urgent!) and I'm going slightly crazy with…
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Living with cancer for over a Decade
Hi I am new to this group and my name is steve 12 years ago I was diagnosed with prostate cancer long story short. But I’ve had various treatments over the years and fought hard to beat it we don’t talk openly about prostate cancer amongst us men and really should it’s an eye opener any way after various hospitals treating…
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A very odd problem
I would really appreciate anyone to discuss this with me. My whole experience with this over now very nearly 9 years has caused me great distress. You think it can't happen and yet it's absolutely happening. Unscrupulous seller on Amazon marketplace sells me this 'thing' and I put it on my skin and it stays on my skin like…
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Crohn's and Colitis Awareness Week
Tomorrow is the start of Crohn's & Colitis Awareness Week. If you didn't know... * Crohn's Disease and Ulcerative Colitis are the main forms of Inflammatory Bowel Disease. * There are others such as Microscopic Colitis and Proctitis. * People will experience IBD differently. Symptoms can include pain, loss of control over…
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Tinnitus
Not sure if this is the right place to post this but here goes What would cause tinnitus to get suddenly louder does anyone know. My right ear is louder than it's ever been today, in fact its usually my left ear, which is ringing but much quiter. Had it in the left ear for some time, right one is fairly recent. Cant go to…
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Dystonia affecting vocal cords/breathing
Hi, my daughter has recently been diagnosed with dystonia which is affecting her vocal cords. She is 8 months old (4 months corrected). She is currently in hospital and has been since birth (long backstory). This issue with her vocal cords is what is keeping her in hospital. She has suffered from severe apneas causing her…
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Stomach cramps .
Due to IBD , I get quite bad stomach cramps . I do take meds but it is very uncomfortable.
