I am a former CSF leaker (sealed on August 31, 2011; see my brief story below) and a fellow patient of Dr. Linda Gray Leithe at Duke. Many of you I have "met" on Facebook and others of you have been brought to my attention by patients of Dr. Gray. You are well aware of the extreme difficulties involved in getting proper diagnosis and treatment for CSF leaks (Intracranial Hypotension) and/or Intracranial Hypertension. All of us have suffered physically, emotionally, and mentally. For most of you, Dr. Gray and her team have been at the end of months, even years, of suffering, providing unsurpassed treatment with the best care possible.
I am writing to tell you about the "Intracranial Hypo-/Hypertension Community Support Fund" that has been set up with the Duke Medical Center in order to support the work of and the patients of Dr. Gray [and associates]. The "Intracranial Hypo-/Hypertension Community Support Fund" has three long term goals, at this point:
At this point, my family and friends have been the sole supporters of this fund. The funds thus far have been used to pay a research assistant for Dr. Gray and her team. The work of the research assistant is enabling Dr. Gray to bring to completion two papers for publication; one is intended for a wider, more general audience, and a second is article for publication in a specialized medical journal(s). Right now, Dr. Gray and her team are working on establishing a fellowship program to train more doctors to diagnose and treat Intracranial Hypo-/Hypertension. [To establish a Fellowship cost $750,000. Your donations will help no mater what the amount.] They also hope to do more hires. With more financial support for this fund, Dr. Gray, her team, and Duke Medical Center can do so much more for people like us.
For me, the decision to support this fund was easy. I did so both in gratitude to Dr. Gray, her team, and Duke Medical, for giving me my life back after months of suffering, and in the hope that more people that suffer from the horrible conditions of Intracranial Hypo-/Hypertension can be helped. I hope that you, your family, and your friends can make a similar decision. To garner support for this fund, I sent a letter ("snail mail") to my family and friends that outlined the history of my CSF leak (failed diagnoses, failed treatments, the difficulties of having the condition, what Dr. Gray and her team did for me, etc.); explained the long term goals of the "Intracranial Hypo-/Hypertension Community Support Fund"; and asked that they consider contributing to this fund.
I should also note that giving to this fund can be a great way to give a donation "in honor of..." or "in memory of..." If you specify such a designation and give the name(s) and addresses of the person(s) that should be notified of this designation, Duke Medicine will send a card of notification. (Note: the monetary value will not be included in such notifications.) For example, with the recent birth of my son, I requested that in lieu of gifts, people could give money to this fund. I received cards from Duke Medicine notifying me of the people that gave gifts in honor of Freddie's birth.
I hope that you are able to support this fund in some way too, and also, get your family and friends to do so as well. If you, your family, or your friends would like to contribute, you can send a check to:
Joseph W. Tynan, J.D.
710 W. Main St, Suite 200
Durham, NC 27710
Please make the check out to "Duke University" and put "Dr. Linda Gray Fund" in the memo line. Your contribution is tax-deductible and you will receive a receipt from Duke.
Rather than a check you can give online, select "Add an unlisted designation" near the bottom, then enter "Dr. Linda Gray Fund" in the box that appears. Duke will mail you a tax receipt for your records to be used when filing your taxes.
If you have any questions, please feel free to contact me (919) 385-3114; joseph.tynan (AT) duke.edu
All the best,
ksrubin (AT) gmail.com
My story is similar in many ways to you and the other leakers that have been treated by Dr. Gray. My journey to get to Dr. Gray took many months, many bad experiences with doctors that did not listen to me or who were incapable of properly diagnosing me, bad diagnoses, failed treatments, lots of medical expenses, and, of course, a lot of physical, mental, and emotional suffering. My leaks (several cervical and thoracic) were the result of a prolonged, unmedicated labor and delivery of my first son Samuel in December 2010 that put too much pressure on my dura. I am happy to report that one trip to Dr. Gray in August 2011 fixed the leaks. She provided amazing follow up care over the 8 months that I took medications to treat rebound high pressure. As you can imagine, caring for a newborn son with both low pressure and then high pressure was extremely difficult. I cannot thank Dr. Gray enough for bringing me to where I am now. I recently welcomed my second son Freddie into the world (April 3). I am in great health and enjoying life with "my boys".