Welcome at this site !
Welcome at this website about the following syndromes :
- Holmes-Adie Syndrome
- Harlequin Syndrome
- Ross Syndrome
- Horner's Syndrome
Do you have one of these rare syndromes? Than I would like to get in contact with you.
Why this site?
There is too little information about these syndromes. And if there is any
information, it mainly concerns medical reports which are difficult to read.
Most of this medical reports are in English, which makes it even more difficult
to understand for foreigners…
Exchange of information can lead to more and better conclusions. Because these syndromes are rather rare there is not much research done. Through this site I will try to collect more information from patients and neurologists, worldwide...
The syndromes are often not recognised by GP’s (GP = general practitioner). Patients of the Syndromes are often send to the wrong medical specialist. Sometimes it takes years before they finally hear a name for the cause of their physical problems. Some patients finally find an answer when they search at the Internet (at medical forums).
Because not much information is available and because the syndromes are rather rare, some patients experience a lot of misunderstanding in their surroundings.
Some patients think that if they are diagnosed with one of the syndromes, their physical situation will not develop further. Unfortunately that is not always true. Some patients experience (more) problems at a later stage. In my case it took 20 years...
When a patient is diagnosed with one of the ‘basic’ syndromes (Holmes-Adie syndrome or Harlequin syndrome), there also might be proof for the fact that the other basic syndrome is also present. Unfortunately in most cases the medical research is rather superficial. Further research (by medical specialists) is possible and should be done!
Goals of this website :
- To become the online information center about these syndromes (in several languages).
- Further (global) research
- To take away the misunderstanding patients experience in their surroundings
Every patient – especially those who (already) experience physical problems - wants more information about his/her syndrome and about the possible treatments of the physical problems.
The cause can not be taken away but the effects can perhaps be treated…
If you are a ‘patient’ without further problems at this moment, please realise that this might change. Let’s help each other by exchanging experiences (anonymous). Help is important for better understanding of the syndromes and for better treatment of the effects of the syndromes. First step in helping each other is to contact me through this e-mail-address :
You can also use this e-mail-address if you have questions about your syndrome… (Questions in English please...)
How to use this site...
1. First choose the language you prefer (for some languages we still search a translator).
2. Than choose a subject from the navigation bar on top of the page. This navigation bar will only be visable after choosing a language (also when it's the English language...).
3. Inside that page you can choose a subject from the navigation bar at the right side.