A message from Jack Shields Managing Director of The CADASIL Research and Support Trust:

Dear CADASIL Colleagues, Families and Carers

Having used L-Arginine as a self treatment for at least 25 months at low dosages in capsule form, and only in the last four months increased my dosage to 13 grams or more per day in a drink format (– unfortunately no longer available in the UK). I personally have found an astounding improvement I my health in this period, possibly because of the increase in HGH (Human Growth Hormone) that increased levels of Nitric Oxide stimulates

I have had to source a new supply that is formulated with a mixture of L-Arginine, vitamins and other normally safe ingredients in a drink format, which I have been assured will be available to us all at the beginning of May, at the retail price of around £80 for a months supply.

I have explained to some of you earlier that I have had to fight almost irresistible objections from representatives of the medical profession for advocating the use of a treatment that does not meet with their approval, yet they have explained to me (in almost the same breath) that they can not do an evaluation as they have been allocated funds to do the work in finding a cure for CADASIL, not a treatment.

In many discussions with such people I have explained to them that even a few hours without treatment might well result in a migraine attack or stroke that could produce permanent disablement or even death. The typical replies are that we “older” patients should be prepared for such eventualities and agree to “gift” our damaged brains so they can speed up their research work.

I recommend the following,

1.Take action yourselves. No one will do this with the enthusiasm that you have.
2. Do not communicate with each other to just seek sympathy. After 10 years of unfailing dedication I would claim that no one has done more than Billie in bringing us together, but we need to use this strength to demand action, not hope for action.
3. We are now not alone and should look upon ourselves as a very powerful union of CADASIL people, demanding the expert advice we need and procuring our own answers. Let’s not allow so called scientists re-invent or rediscover the answers on an individual basis, let us force the issue and give them all the information we have discovered.

I trust that many of you will adopt our approach and join us in pursuing the goals of the CADASIL Trust.

Best Wishes

Jack Shields