Touching base

I heard from one of my research friends that there is promising news coming out of France about TNA alpha inhibitors and their success in stopping RE.  TNA alpha inhibitors are a class of drugs that are currently used to treat other auto-immune, inflammatory conditions such as arthritis and psoriasis.  The drugs have been around for 10 years and are now routinely prescribed.  Keep you posted as I learn more.

I continue to receive e-mails from families impacted by RE that are receiving sub-par medical advice.  RE is a rare disease and some doctors are not likely to admit they do not have experience treating the disease.  In some cases the doctors are using medical literature that is a poor substitute for experience.  It is especially alarming when the family is not well educated and without financial resources, and unduly relies on the doctor’s input without seeking a second opinion.  In many of these cases the doctors are slow to educate the patient about the inevitably of the hemispherectomy surgery and do not offer access to families that are post-surgery.  It is critical that a patient establish that their doctors have treated the disease.  An important corollary is that if the patient is facing hemispherectomy surgery that the neurosurgeon have experience performing the surgery.

For families in search of answers regarding RE and hemispherectomy surgery I suggest that they connect with the facebook page of the Hemispherectomy Foundation.   On this page there are literally dozens of families that offer advice, emotional support, and answer questions for families that are in a desperate search for information.  It is important to connect with these families rather than relying on a single doctor to guide your medical decisions on how best to treat RE.  Another place to check is the Hemi Center  resource page on the website of the Hemispherectomy Foundation.  If your treating institution is not on this page odds are they do not have a history of treating the disease.

Another frustration is the reluctance of neuro-surgeons to participate in our tissue transfer programs despite the wishes of the family.  We have shipped tissue from all over the globe to our tissue repository at UCLA, yet there are still neurosurgeons that do not respond to our outreach.  On some occasions the neurosurgeons stand behind outdated privacy rules and hospital regulations despite the support of the family for our program and impressive roster of hospitals that have already participated.  If you are facing hemispherectomy surgery be sure to tell you surgeon that you would like your child’s tissue to be a part of our research efforts.

Grace recently fell and had a concussion.  She does not ambulate that well and unfortunately falls can occur.  When Grace falls it is potentially dangerous as she has a limited ability to protect herself and blows to the head can result which occurred this time.  She is now fine, a bit bruised, but otherwise fine.  Five years out from surgery  Grace’s inability to ambulate independently following the hemispherectomy surgery presents all kinds of perplexing issues.  Grace will be participating in a study this summer at Columbia University that will simultaneously combine upper and lower rehabilitation in an effort to increase her balance and improve her gait.  We are hopeful this innovative therapy will help.

We were recently mentioned in an article on Motherboard which is VICE Magazine’s science and tech website.  Good article that helps spread the word about hemispherectomy surgery.

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