List of questions that you may like to ask your doctors
These questions are written in a style where we assume a parent or care provider is asking the questions. They are equally applicable to adults with BPES.
About eye problems
1. What problems are there now, that you know about, and how can we treat them
2. What problems are likely to develop in years to come?
3. When is the best time for my child to have corrective surgery?
4. How many operations are they likely to need?
5. Does every child with BPES have the same surgical procedure?
6. Does it matter if the operations are delayed or brought forward?
7. Will you operate on both eyes at the same time?
8. Will my child be in pain or discomfort?
9. How soon will the healing process take place?
10. Will there be many scars?
11. How can we best prepare for surgery and aftercare?
12. Will my child need to wear glasses?
13. How is their eyesight affected?
1. How (or when) do I know if my daughter is infertile?
2. Can any provisions be made now?
3. Is any treatment required now?
4. Is it possible for her to carry a child (benefit from IVF treatment)?
5. Is this type of infertility associated with any other female health issues?
6. Is anyone doing any research now which might help us soon?
7. If my son or daughter has Type 2, then what implications does that have for their children?
1. Our child has BPES, nobody else in our family has BPES. How did this happen?
2. In which circumstances can BPES be passed on?
3. I have BPES, but my brothers and sisters don’t have it. Can they pass it on?
4. Can men have “Type 1” BPES?
5. Do all people with BPES have the same physical characteristics?
6. Why do some people have just BPES, while others seem to have a range of additional health problems?
7. What research is taking place that might help us in the future?
Lista delle domande che potete gradire per chiedere ai vostri medici
Queste domande sono scritte con lo stile con cui presupponiamo che un genitore o un assistente sanitario faccia le domande. Sono ugualmente applicabili agli adulti con BPES.
Circa la genetica
BPES Family Support