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I myself, am a survivor and very fortunate to be alive after giving birth to a tiny but healthy little girl. After a miraculous recovery, my husband and I realized just how lucky we are and wanted to do all we could to help prevent this from happening to anyone else. Until I was diagnosed with HELLP Syndrome, we had never heard of it. This seemed to be the general rule with most everyone we knew.
We were thrilled to find out about the HELLP Syndrome Society and all the wonderful things they are doing to fund research and educate others. Their survey to try and profile women who are likely to get HELLP Syndrome is amazing.
In an effort to try and help fund this survey online, we are holding the first annual "Tucson HELLP" golf tournament. This tournament is being held at the Arthur Pack Golf Course in, you guessed it, Tucson, Arizona. It will be held on June 11th, 2005. All proceeds will go to the 'Fund for HELLP Research and Education'. If you enjoy golfing, I encourage you to join us. It is a four person scramble, lots of fun and the cost is only $55 per person to include lunch.
If golf is not your thing or traveling is not possible, you can still participate by sponsoring a tee box sign. The cost to sponsor a tee box is $100 and each sign will be placed at one of the 18 holes. For more information on this tournament or for information on how you can hold your own tournament, please email Traci at twilliams490@comcast.net or call 520-744-0070.
From Trina
dragonfly4u@stny.rr.com Are there studies to show lasting side effects from HELLP? My experience is migraines, depression, agitation and fatigue. I also feel guilty for having these symptoms as I have a healthy, beautiful little girl who I am eternally grateful for and thank God she is okay. Although I have been living with these feelings for almost six years now, I just recently had the ability to research these very difficult questions. I am 28 years old now and still feel like I am not the same happy-go-lucky person I once was. I can relate to almost all of these health issues through your survey with other women. It is nice to know that I am not alone but in the same sense, it troubles me that there is little information to help me.
From Kristy
cindergretta@comcast.net I had my baby on 04/07/05. She was born 5 weeks early and is still in the hospital. After 1.5 weeks of pain and gall bladder/kidney stone/appendicitis diagnoses, I found out I had HELLP and baby was born about 6.5 hours later. It has only been 10 days, but I am still just obsessing on what happened to me. Is that normal? It seems like since I came home from the hospital everyone (except my husband - he's SO supportive) want me to be "normal." But I don't feel normal. Can you send me any info on this? How long should I feel this weakness and tiredness? My doctor went on vacation for 2 weeks the day after I delivered and I desperately want to talk to her, but I must wait. Can you help? Thank you so much.
From Sheila
sgcoquet@earthlink.net I am grateful to have found this website. I was diagnosed with atypical HELLP Syndrome on February 10th and delivered via C-section on February 11th (32 weeks gestation). Chase John was born 3 pounds 8 ounces and has just reached 4 pounds. He is doing extremely well, under the circumstances. As I begin my search for answers and support I would appreciate any information that may be helpful in learning about HELLP Syndrome and its affect on mom and baby as well as future pregnancies.
From Julie
jacuff@mc.utmck.edu I had a baby at 30w 4d gestation in 2004 due to Class 1 HELLP syndrome, and would like more information regarding HELLP syndrome and risk of recurrence, what tests I need to have done before another pregnancy, etc. I would love to have another baby, but my husband does not. He is afraid for me to go through that again. While our daughter is healthy and happy, he feels like we would be tempting fate by trying for another baby. We were so incredibly lucky with our daughter and my recovery. Any information that you could provide would be wonderful. I keep getting conflicting information from my doctors, my daughter's doctors, and what I can find online. Thanks,
From Kristy
cindergretta@comcast.net Can someone tell me something about this: I am shaky. It has been 5 weeks and I've noticed in the last week that my hands tremble and my knees shake, etc. Has anyone else experienced this or know why? About the same time, I've noticed that by mid to late afternoon, I get very weak and faint. I turn really white and feel like passing out. Anyone know anything about that? Thank you.
From Kathy
kaki4526@hotmail.com Hi. I suffered HELLP Syndrome and renal failure with the birth of my son, who is now 15 months old. I'm interested to know if you have more information on HELLP and the possible long-term effects. My doctor seems to think it would be fine for me to get pregnant again; however, my instincts tell me otherwise. It has taken my body over a year to recover and I'd like to know if this is common. I'd love to hear from other women who have been through a similar experience. No one I talk to seems to know anything about HELLP. Yes, my doctor was very on top of my situation. I was monitored closely during my last trimester due to early contractions (bed rest and no work). I was seen every week! My doctor said my case was the fastest progression of Preeclampsia and HELLP she had ever seen. Other than swelling, I didn't have the typical "symptoms;" however, the blood work confirmed HELLP when I was admitted to the hospital. They were happy to catch it early but I still had renal failure the day of the delivery. My doctor did say she would monitor me closely if I decided to get pregnant again. However, my Nephrologist told me, if all of this happened again, the kidneys could sustain more severe damage. I want a good quality of life for my son, I'm not sure I want to go through all of this again.
From Lisa
Lisa Brown, a member of the HELLP Syndrome Society and Cofounder of Pregnancy and Infant Loss Remembrance Day, October 15th, is selling Pregnancy and Infant Loss Awareness Bracelets. If you are interested in purchasing a bracelet please go to http://www.october15th.com/bracelets.html
From Mindy
melmin@aol.com As a result of having HELLP what medical issues am I more at risk of acquiring later in life? Can you direct me to some articles that I can read? Thanks.
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