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From Carrie
carriekaye@yahoo.com (South Bend, IN) My name is Carrie. I had HELLP in 1995. I used to receive your newsletter. But I moved out of state and lost my email address about 4 years ago, and decided I needed to move on from this portion of my life to help recover from the loss of my son. Anyway, I have gone on with life and not thought much about my HELLP for a long time... until yesterday. I thought I should write and tell you what happened. This information may be old news (I haven't kept up on latest HELLP research for years), but I thought I'd email you anyway. My husband has a rare neurological disorder called pseudotumor cerebri (PTC), a condition which has been considered idiopathic (no known cause) for a hundred years. There is a Dr. Charles Glueck in Cincinnati who is doing a study on this disorder. He also happens to be one of the top doctors in the world for treating Polycystic Ovarian Syndrome. His research thus far shows that PTC is caused by underlying coagulation disorders. We met with Dr. Glueck yesterday about my husband's PTC. In interviewing my husband for this study, my history of HELLP syndrome came out. The doctor got excited and then spent about half of our time discussing me instead of my husband. Dr. Glueck informed me that HELLP syndrome is caused by some of the same disorders that caused my husband's neurological disease. The doctor sent me home with a list of tests he wants my primary doctor to run, which he will interpret and then recommend treatment for. In case you're interested, these tests are:
4G/4G PAI-gene
V Leiden
MTHFR
Prothrombin gene
Homocysteine
Anticardiolipin antibody
Lupus anticoagulant
He also wants some hormone tests done, like FSH, LH, testosterone, androgens, insulin.
I told him that I'd had some of the hormone tests done in the past (specifically FSH and LH) and that my results were normal. He informed me that the ratio is as important as the numbers themselves, and most doctors wouldn't think to look at that. I told Dr. Glueck that I was rather shocked and surprised at this information. I said, "you seem to know a lot more about HELLP than any other doctor I've ever talked to." His response was simply, "Yes, I do." Like I said, I don't know if this information is new to you because I have been "out of the loop" for some time. But it was intriguing enough to me that I thought I'd tell you about it. He sent a document home with me that discusses preeclampsia. It's available online at his website at:
http://blues.fd1.uc.edu/~gartsips/venous.htm
I think you'd find it intriguing.
From Sue
strehlow@g2a.net (Hatley, WI) On January 2nd, 2000 I delivered a baby girl at 39 weeks via emergency c-section under a general anesthetic without my husband even able to be present due to concerns. At one point throughout the ordeal my LDH level was up to 2022 while my platelets hit the 22,000 mark prior to a 10 unit blood transfusion. We are both very fortunate and blessed to have come through the journey with a favorable outcome. While I have shared this in the past and you have been courteous enough to include me in your newsletter updates, today I am writing you for a different reason. Rather briefly, my husband's brother and his wife Tim and Vicki have just repeated our history although the time and circumstances vary, ultimately HELLP syndrome has now captured their lives as well. Unfortunately, their daughter Savana Rose passed away on Monday, February 24th, 2003 after her four day struggle. Due to the varied complications and significance of such, she was allowed to part peacefully and no longer suffers. Savana was born at 4 1/2 months, weighing just 14 ounces and a tiny ten inches long due to HELLP syndrome via a "normal" c-section due to maternal complication - which have subsided since delivery thankfully. I write this only as reference for anyone pursuing research in this area. I find it so ironic that we would both suffer from something as rare as it is in such relation to each other and now question the possibility of an incompatibility of sorts among our husbands - also brothers. For some reason I seem to recall another similar story - I don't know if it was someone by the name of Jeff?? or exactly who, but wanted to express this as a point to ponder. Thank you for all you have done and continue to do, as it lingers in my mind still due to its baffling nature, and I remain reassured by all efforts.
From Sabrina
sabrinacogo@hotmail.com (Venice, Italy) Hello, my name is Sabrina. I am Canadian but married and living in Venice, Italy. I was diagnosed with HELLP Syndrome in 1998 with my first pregnancy. I was in a strange country in a strange hospital and unable to understand these doctors or nurses. My little Jessica, who is now going to be 5 years old on April 7th, was born by emergency c-section. I had my c-section at 5:30 in the evening and when I woke up the next morning at 7:00 am, I was totally blind. I called for help and finally someone arrived. Anyhow the reason I am writing is to ask if there is a representative or someone that can help me find a doctor. I would like to have another child. I have had many tests and quite a few blood works done, and everything came back negative. My gynecologist said that it would have been better if something had come back positive, so that could have been treated. I really, really want another child. I am an only child and have always hated being the centre of my parents' attention. I want my little Jessica to have at least another brother or sister. I don't know what to do. Is there anyone that can help me? Jessica was born at 29 weeks. She stayed in an incubator for 25 days. Then in NICU for another 20 days, and finally after 45 days, she came home. She has no medical problems. She is healthier than myself. My e-mail is sabrinacogo@hotmail.com, if anyone can help me. Thank you. I read your letters every month, and have gained a lot of knowledge of HELLP Syndrome. I thank you so much for this society!!!!!
From Anne
anne@preeclampsia.org (Bellevue, Washington)
We are pleased to announce that the Preeclampsia Foundation is the recipient of a Bill and Melinda Gates Foundation grant. Click on the attached link below to see the full press release. We would like to thank, of course, the Bill & Melinda Gates Foundation (in particular Dr. Richard Klausner, Dr. Gordon Perkin, Amy Knight and Amsale Mengistu); our board and staff (Dr. Thomas R. Easterling, Eleni Tsigas, Joan Lambert, Anil Singh-Molares, Alisa Schultz, and Angela Demoore); our Medical Board (Dr. Marshall Lindheimer, Dr. James Roberts, Dr. James Martin, Dr. Phyllis August, Dr. John Repke); and the support of co-sponsors--the ISSHP, APEC, the HELLP Syndrome Society. It goes without saying that this is the culmination of hard work and support from the family, friends and women impacted by preeclampsia. We are very much in your debt. (Editor's Note: Click on www.preeclampsia.org or copy and paste the address in your browser, and then click on Press Room.
From Terri
TBArthur@aol.com (Severn, MD) and Renee picotr@hotmail.com (Midlothian. VA) both alerted me to the fact that an article has appeared in various newspapers regarding preeclampsia. The LA Times and the Virginia Pilot (Norfolk's newspaper) both carried the article. You may be able to find the article in the archives of these newspapers.
http://www.pilotonline.com/
http://www.latimes.com/
"Boston researchers have discovered the elusive cause of preeclampsia, the sometimes fatal complication of pregnancy that affects about 200,000 U.S. women each year.
Studying pregnant women, a team from Beth Israel Deaconess Medical Center discovered that the disorder is associated with high levels of a protein that narrows blood vessels, impeding the flow of blood and oxygen.
When they then induced high levels of the protein in rats, the animals developed the symptoms of preeclampsia, Dr. S. Ananth Karumanchi and his colleagues reported in March's Journal of Clinical Investigation.
The discovery will allow rapid diagnosis of the problem and should lead to the first effective therapy for the disorder, experts said."
(Editor's Note: I sent this to Dr. Easterling and this was his response:
"The science was very good. It is exciting to have researchers from other fields become interested in preeclampsia. The ability to use this information effectively to screen and treat women will take time and is not guaranteed success.")
From Sandra
sandyscouter@hotmail.com (Salt Lake City, UT)
My granddaughter who was the preemie a year ago is doing well! Almost too well! I tended her at my apartment the other day and couldn't keep up with her!
A nurse who works in the NICU at University of Utah hospital says she knows who you are! :) I waited on her at the deli yesterday. That was so good to know a nurse way out here in Utah is aware of your work!!
She said she wished regular doctors would be more aware of HELLP. Then their job wouldn't be so difficult, but your work is growing and spreading out and more and more people are recognizing symptoms! I am certainly glad you were there for us a year and a half ago and helped save my daughter and baby by encouraging us to go with our feelings that something major was wrong and change doctors. I truly believe with the way her liver enzymes were rising, that they might not have made it.
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