Welcome

I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.

In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.

As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.

Email: autoimmunediagnosis@gmail.com

Medical Disclaimer

This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.

Friday, November 27, 2009

HELLP Syndrome in APS and Lupus

I had never heard of the HELLP syndrome until after having my first baby. My symptoms went into remission and the pregnancy went smoothly. I did go into labor 4 weeks early, but it turned out to be a blessing and probably saved both my life and my baby’s. HELLP stands for Haemolysis, Elevated Liver enzymes, and Low Platelets. The HELLP syndrome is a rare life threating complication of pregnancy. Even though the hallmark sign of the HELLP syndrome is a low platelet count, the HELLP syndrome is actually a clotting problem. Something triggers the clotting cascade and the platelet count drops as multiple clots are formed throughout the body including the liver, which ultimately shreds the red blood cells leading to anemia. The only way to stop HELLP and save the mother’s life is to deliver that baby no matter if the baby is able to survive on its own or not. Patients with APS or Lupus are at a higher risk for developing HELLP. Lovenox and aspirin are given to help prevent the HELLP syndrome in Lupus patients. Even on both medications, I still developed the HELLP syndrome. Usually patients developed pre-eclampsia with elevated blood pressure and protein in the urine before developing the HELLP syndrome. I was an unusual case in that my blood pressure was a perfect 120/80 and I didn’t even have a trace of protein in my urine. It’s important for APS patients to be screened using blood work to catch complications before they go undetected too far.

The HELLP syndrome in the antiphospholipid syndrome: retrospective study of 16 cases in 15 women.

HELLP-like syndrome associated with hepatic necrosis in a patient with systemic lupus erythematosus.

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