Frequently Asked Questions

Where can I get information?
There is plenty on this site, or write to Professor Zouboulis (christos.zouboulis@klinikum-dessau.de) or Dr Theodoridis (drtheodoridis@yahoo.comm).
Who can my doctors talk to about this disease?
See list at http://www.degosdisease.com/contact/doctors and the secure section of the site for doctors only for more contacts and information.
What kind of treatments are available?
See the list at http://www.degosdisease.com/info/treatments
Is this disease genetic?
We don't know yet. Some case studies seem to show Degos in families, but usually in the benign form only (in other words, only the skin is affected).
What age are existing patients?
From 3 years old to over 60.
What age were they when first diagnosed?
From 6 months old to 72 years.
Are there any Degos patients being treated near me?
Go to http://www.degosdisease.com/patients/where to see where doctors and patients are, and let us know so that we can add your town and your doctor (with permission, of course).
Do many patients have children?
Yes – some saw the first lesions after childbirth, but others have had children since their diagnosis with no adverse effects.
Do the breakouts of lesions ever stop?
Some people report that they haven’t had any more lesions after a while, but this varies a lot.
Does anyone have lesions on their tongue?
Only one patient has reported this so far.
Any diet recommendations?
Not specifically, as far as we know, although we are recommended to stay as healthy as possible by eating a fresh and varied diet. Multivitamins have been suggested. One doctor said avoid Vitamin K, which aids clotting.
Will the results of the DNA study be available to my doctor?
Yes – s/he can contact Professor Zouboulis and Dr Theodoridis.
Should I look for a family history of Degos?
We're all curious to know where this came from. Maybe your family medical history can throw some light on why we have it. But it is so rare that maybe a search will show up nothing at all. Ask your relatives for any clues…..and pass on anything you think will be of interest to Professor Zouboulis (christos.zouboulis@klinikum-dessau.de)
Is this an inherited disorder?
We don't know. The study in Germany may throw light on this. Please see http://www.degosdisease.com/research/howtohelp
Can my diagnosis be right if I haven't had any outbreaks in 30 years?
Yes! We know of at least one patient who was diagnosed in the 1970s and who is still well. Now is the first time that living patients are being compared. All patients' histories are of enormous importance to this ongoing study. Copies of medical records should be sent to Dr Theodoridis (see http://www.degosdisease.com/contact/doctors)
What tests will tell the doctors if I have Degos disease?
Blood tests, biopsies, scans.
I've been diagnosed – where do I go from here?
- Start corresponding with other patients: you are not alone, even though you have such a very rare condition.
- Ask your doctors to speak to those whose names appear on this website: they are all willing to share their interest and knowledge.
I get so exhausted – is this typical?
Being tired out seems to be very common. Maybe it's because our immune systems are having to work so hard to counteract whatever is going on – whatever, we need to rest when we're tired, and to try to pace ourselves, however annoying and frustrating that may be for us.
Has anyone else got Raynaud's disease or phenomenon?
Yes (– this is a disorder of the blood vessels in which exposure to cold causes the small arteries that supply the fingers and toes to contract suddenly). Several of us have mentioned this.
Do the lesions disappear?
As the lesions are scars from the underlying problem, they may fade but usually stay quite visible.
Can I contact any other Degos patients?
Yes – most are happy to be contacted – see http://www.degosdisease.com/contact/patients
I keep reading conflicting facts about Degos disease. Why is this?
Papers on Degos disease tend to fall into two types: 1.Individual case studies (usually with fatal outcomes) 2.Reviews of some of these case studies Be aware that, in general, only the worst cases get written up! Also, some “facts” are simply not true. For example, you may find that “this disease affects mainly young men.” This just isn't borne out by our own membership. Some more hopeful accounts have now been publishes (see http://www.degosdisease.com/info/articles_papers)
How can I take part in a study of this disease?
Your input will be of enormous value.
Don't hesitate– we don't know where the first clues come from in a study such as this, and you could have the vital missing piece!
First, you and your close family can send small blood samples to Professor Zouboulis and these will be used to extract your DNA, which will be stored along with that of the other patients. (Send a consent form and a family tree, or pedigree).
You can send copies of all blood tests, biopsy blocks, medical records and photographs to Professor Zouboulis.
You can fill out the questionnaire and send that to Judith or to Professor Zouboulis.
See http://www.degosdisease.com/research/howtohelp
Is DNA being studied?
Yes – we patients and our families have sent blood samples to Berlin to Professor Zouboulis for study by Dr Theodoridis, and our DNA is being stored.
Does exercise affect Degos?
Not as far as we know. As exercise improves circulation and raises spirits, it can be argued that it is a very good thing for us!
Does anyone else get discouraged by this disease?
YES! Who wouldn't? But there is a network of friends who know exactly how it feels to have Degos, and we are happy for you to contact us and talk through your worries. Being positive and upbeat may help in our management of the condition, so it is important to support each other. Read other people’s accounts at http://www.degosdisease.com/patients/stories
I have allergies, asthma, skin irritation etc. – do other people have these too?
Some people are particularly sensitive, though not everyone seems to be. Several had childhood eczema; some have nickel allergies. Some find that new lesions itch or tingle, as though a nerve is involved.
My doctor wants to present my case to a crowd of dermatologists. How can this help me?
It may help you indirectly in that many more doctors will then be more familiar with the appearance of Degos disease, and so recognise it if they see it again. Also, if you can show them that you understand something of what is happening to you, they will learn a lot from you.
It will certainly help them if you tell them about http://doctors.degosdisease.com as this is an information hub for doctors as well as patients and their families.
Can I call anyone for a chat?
Of course you can! Phone numbers at http://www.degosdisease.com/contact/patients
Might it help if I take antidepressants?
Probably, yes. There is such a lot which is still not known about this disease, and it is not pleasant to wonder what will happen to you – especially when doctors are at a loss as to what to suggest! Also, if you are suffering any pain from ulcerated lesions or you are unable to sleep or getting depressed, antidepressants will help you to live your life more easily.
How many people have been diagnosed with Degos disease?
Well, estimates vary. Some sources say 160 worldwide since 1942. Some patients have been told they are patient number 60 or 84 - whatever the actual number, it is very very small compared with most other conditions.
However, it may be that some people have the disease but have not been diagnosed correctly or have maybe not even seen a doctor (the so-called “grey number”). The more doctors who see Degos disease, the better, as they may then be able to recognise it if it is presented another time.
Is stress a factor in this disease?
No-one knows, but certainly the majority of patients have a theory that some stressful event or lifestyle may have contributed to their having the disease. Stress is such a subjective condition – what's impossible for one person may be tolerable for another – that we can't measure it properly. Certainly stress does not help anyone to cope too well, so it's important to pace ourselves and take time to enjoy our lives as much as possible.

Disclaimer

Though some of the material on this site has been written by doctors and other health professionals, the Degos Patients Support Group is not medically qualified as such. The information on these pages is for general educational purposes only and should not be regarded as advice on the diagnosis or treatment of either Degos disease or any other medical condition. Whilst every effort has been made to ensure the accuracy of the information provided, the Degos Patients Support Group can neither be held responsible for such information nor for any information on linked sites. The information provided on this site is designed to support, not replace, the relationship that exists between a person affected and his/her existing doctor. Doctors may visit the secure section of the site to discuss issues with other professionals.

Page last modified on 29 August, 2008

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