We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms that are very similar to Dercums Disease Syndrome.
Dercums is considered a disease and a syndrome: A syndrome is the association of several clinically recognizable features, which Dercums has.
I have asked many GPs and they have all said the same thing, they do not know what it is that is causing the lipomas, and in turn, the pain. The G.P’s talked a lot but with no real advice, yes they gestured a lot too, but nothing.They said they would look into it, but still nothing.
So we decided to educate the Local GPs so they will be in full control and are able to give a correct diagnosis. This will take time and money, but it MUST be done. Research and education are two of our main goals.
We aim to find more ways of easing the suffering and eventually find a cure for Dercums Disease Syndrome. Many social diseases have found cures. We want one for Dercums. Lots and lots of money has been spent finding cures for many social diseases, this is a good thing, but we need a cure for Dercums and in turn the many rare diseases that are associated with Dercums Disease Syndrome.
Dercums Disease Syndrome has many faces. It hides behind many other symptoms, thus giving a false reading to our local general practitioner. We need to correct this as soon as possible. Educating local GPs is a good start, thus ending the quandary of our GPs and minimising the risk of misdiagnosis that causes the patient to be sent away from the local GP, none the wiser than when they arrived.
No help, no understanding, no pain relief, no hope. This story has been repeated all over the world and this must STOP.
We are asking for YOUR support, and YOUR help to raise money, so we can fund the research with a hope to find a cure. We have the support of some of the leading professors in the diagnosis and research of this debilitating disease, and we want more like them to support and join us. We need to get them all together so we can hold a seminar and lecture tour and to publish an article in the Lancet medical Magazine .
We MUST inform the world that Dercums Disease Syndrome is more prolific and causes more illness due to misdiagnosis.
Please support this very important cause and in turn we can support you.
What We Are About
We are about getting people to sit up and see what we are trying to do.
We are about holding fund raising events to help finance this fight.
We are about getting our GP’s to understand what Dercums is truly all about.
We are about getting the sufferers the help they so desperately deserve and need.
We are about helping the sufferers of this illness to realize and understand they are not going insane.
IT IS NOT IN THEIR MINDS!!
We are about bringing the Doctors and specialists from the USA and the rest of the world to us in the UK.
We have a tough fight on our hands. It’s going to be a hard road, but if all of the groups come on board with us, and you out there fight with us, we can do this, for all the people with Dercums and all the rare diseases. We can get help for all of those things that need to be sorted out.
We won’t bombard you with loads of info, but we will get our point across with what we are all about. We will have a lot of fundraising events that we will all have an immense amount of fun doing.
I myself have been fighting this disease for years and it has been a long hard road. I know there is a lot of people suffering out there on their own with no one to help them. well now we are here and we will NOT go away. The fight is on. Lets get together and stand together and get the help that all of us are entitled to.
We need to educate the general public. To raise awareness of Dercums and rare diseases. To research and find methods of alleviating the symptoms and pain associated with such diseases. To find care and convalescence, we will be here to help you anyway we can, YOU are NOT on your own. You have us. The DDRD foundation has been born. God bless.
Symptoms of Dercum’s syndrome
The list of signs and symptoms mentioned in various sources for Dercum’s syndrome includes the 8 symptoms listed below:
. Painful skin bumps
. Absence of menstruation
. Reduced sweating
. Reduced skin sensitivity
. Fatty skin lumps
Complications list for Dercum’s syndrome:
The list of complications that have been mentioned in various sources for Dercum syndrome includes:
. Mental depression
. Cardiac failure
Dercum syndrome: Rare Disease
Dercum’s syndrome is listed as a “rare disease” by the Office of Rare Diseases(ORD) of the National Institutes of Health (NIH). This means that Dercum’s syndrome, or a subtype of Dercum’s syndrome affects less than 200,000 people in the US population.
Ophanet, who are a consortium of European partners, currently defines a condition as rare when it affects 1 person per 2,000. They list Dercum’s syndrome as a ” rare disease”. More information about Dercum’s syndrome is available from Orphanet.
About prevalence and incidence statistics:
The term ‘prevalence’ of Dercum’s syndrome usually refers to the estimated population of people who are managing Dercum’s syndrome at any given time. The term ‘incidence’ of Dercum’s syndrome refers to the annual diagnosis rate, or the number of new cases of Dercum’s syndrome diagnosed each year. Hence, these two statistic types can differ: A short lived disease like flu can have high annual incidence but low prevalence, but a life-long disease like diabetes has a low annual incidence but high prevalence.
When checking for a misdiagnosis of Dercum’s syndrome or conforming a diagnosis of Dercum’s syndrome, it is useful to consider what other medical conditions might be possible misdiagnoses or other alternative conditions relevant to diagnosis. These alternate diagnoses of Dercum’s syndrome may already have been considered by your doctor or may need to be considered as possible alternative diagnoses or candidates for misdiagnosis of Dercum’s syndrome.
Our Vision for the future is to Educate and Eradicate. Research and Cure. We want to educate the local GP’s, to be able to have on his or her computer screen all the information regarding Dercums Disease and other rare disorders, and how to assess them. To give a diagnosis or to be able to make a correct referral to the relevant specialist or consultant. We intend to hold seminars and lectures all over the United kingdom and to bring together various knowledgeable specialists who have readily investigated Dercums Disease and other rare diseases, and are finding ways to ease the sufferers plight.
Viewed 26559 times
Viewed 26559 times