Helpful Individual Experiences

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This information comes from various sources and is provided for general information purposes only and  is unverified and unendorsed. We do not recommend, endorse or make any representation about the efficacy or suitability of any specific tests, products or treatments that may be contained on this website.

In some cases our members have contributed their  thoughts and experiences for the benefit of other sufferers.  We feel this sort of information  is extremely useful as only a sufferer of BEB can explain what is is like to live with BEB  –   please note that it is not intended or implied to be a substitute for professional medical advice. and again we stress that it is unverified and unendorsed.

Eye Gel Update

A member has notified us that a prescription filled in June 2018 for Genteal Gel which used to be available for the  subsidized price of  $6.40  now costs $10.74.  It  now attracts a Brand Premium of $4.34 as does the Genteal Eye Drops.  A generic substitute is available.

Problem with watery eyes

A member has reported that the issue of having watery eyes  for a few weeks after botulinum toxin  injections has been much improved by the use of a gel at night and the wearing of a sleeping mask.

Anaesthetic Cream

Several members have reported trying the new anaesthetic cream currently being trialed in Perth and have hailed it a success with the pain of the injections  greatly reduced.

Read more about this on our Beneficial  Aids page.