Now that I've got over my acute CLIPPERS symptoms and having hit a stable patch supported by various pills there's been some more time for reflection. That is reflection on the state of CLIPPERS rather than the reflection of a few months ago which without, wanting to be melodramatic, was more focussed on questions like "Will I make it as far as Christmas?".
Many of the outstanding questions relate to long-term prospects for treatment and overall prognosis. Other questions relate to the nature of the condition itself. Unfortunately answers are few and far between so for now I can only offer the questions and hope to fill in some answers at a later date. Not too many surprises in the following list but a bit depressing it was so easy to write.
- What triggers CLIPPERS and why does it seem to span such a wide age range?
- Why are the effects localised towards the back and base of the brain?
- How many sub-types of CLIPPERS are there?
- Does CLIPPERS even exist or is it just a special case of something else?
- Is there a genetic / environmental component?
- Is the best treatment strategy corticosteroids (like Prednisolone), steroid-sparing drugs (like Azothioprine) or a combination?
- Can these treatments prevent symptom recurrence indefinitely?
- Can the condition be treated directly?
- Does CLIPPERS ever resolve or is it a chronic condition (i.e. once you've got it you've got it)?
- Are there any common progressive components (e.g. atrophy) and if so can treatment prevent it or slow it down?
- Is progression a function of age or of time from diagnosis (or neither)?
If anyone knows the answers to any of these questions please let me know. Actually please let the doctors know first!
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
