Out of the Shadows

I have had a severe case of psoriasis and psoriatic arthritis for 30 years.  During my life there have been significant scientific advances that have produced effective treatments.  In recent years the class of drugs known as biologics have helped people with psoriasis and psoriatic arthritis.  That said there still are people that suffer from devastating psoriasis.  Epilepsy shares a similar story, there are drugs that help some, but there are  too many individuals that live with incurable epilepsy and the lifelong consequences of debilitating seizures.  Incurable seizures are a hallmark of the rare epilepsies including rasmussen’s encephalitis and we need to do fund more research if we are to eliminate radical solutions such as hemispherectomy surgery as a treatment.

Epilepsy and psoriasis share another trait, they are both characterized by stigma.  For psoriasis this has changed somewhat in recent years as celebrities such as golfer Phil Mickelson and comedian Jon Lovitz have come out in support of their condition.  The same is not true of epilepsy, there are no celebrity spokespeople.  Epilepsy is still in the shadows and its despair is not fully appreciated by the public at large.

According to a recent governmental report, there are 59,000 and 12,000 new cases of Parkinson’s and multiple sclerosis, respectively reported each year in the US.  The number of new cases reported each year for epilepsy is 150,000.  These diseases receive a similar amount of research funding from the US Government and more importantly, the amount of private funding available for Parkinson’s and multiple sclerosis is significantly higher than the private funding of epilepsy.  Additionally, there are about 40,000 deaths reported per year from breast cancer in the US compared to an estimated 50,000 per year from epilepsy.

E-mail of the week:  Another contact from Australia

“I live in Australia. My daughter Sophie is 9 yrs nearly 10 and had her 1st seizure 20 months ago and was diagnosed with Rasmussen’s by her epileptologist 1 year ago. 10 months ago she had rituximab course over 4 weeks as per normal protocol, since then Sophie has been on the normal AED’s keppra, frissium, and andtopamax. This week she has EEG and blood tests, next week MRI to gauge disease status given the length of time since rituximab course. As per so many other parents of children with RE my wife and I have trawled the Internet over the past 20 months looking for ways to help our daughter. As wonderful as our doctor is she cannot give us any advice on adjunct therapies ie complementary supplements. Do you know of anywhere we can find opinion of krill oil, turmeric, vitamin D & E, polypodium leucotomos as supplements to augment the course of auto immune diseases?  These are the supplements Sophie takes daily to hopefully decrease the inflammation of her right hemisphere. In addition she takes an anti cancer organic vegetable juice which I make daily. Even though there is no evidence for such supplements in relation to RE, Sophie’s delicate situation demands we as her parents leave no stone unturned in doing everything we can to help her maintain as much quality of life as possible. Hopefully you have some advice for us.”

If you have any insights on natural supplements, please let me know.

We shipped more tissue this week.  We are extremely grateful to the surgeons and families that are coming for forward.  We need to know about every hemispherectomy surgery that is taking place for RE.  Currently, we are working on a case in Seattle and we have heard there may be a case in Boston.  The tissue is precious and we cannot find a cure without the tissue.

Grace relaxes enjoying her book on the beach.

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