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.

Monday, March 14, 2011

Lupus Advocacy Day

I had the privilege of representing Lupus patients from my home state at Lupus Advocacy Day on Capitol Hill March 1, 2011.

Lupus Advocacy Day

It was interesting to hear about the programs the Lupus Foundation has lobbied for to help Lupus patients. It was even more exciting to meet with the representative and talk to them about how Lupus has affect me and my family. I was surprised by how interested they were. The house of representative that I met with even took time right before having to vote on a continuing resolution to keep the government open. He kept asking question about my story and was horrified by my experiences. He’s eyes grew large when I told him I finally had to travel and pay a doctor out of pocket to get a diagnosis. He was shocked when I told him the doctor spent two days on my case. It took her over six hours just to read through my medical records and try to piece together what happened. That’s why the doctor couldn’t take insurance. No insurance company will reimburse a doctor for that amount of thinking time, but sometimes that’s what it takes. He seemed to understand that Lupus needs better technology to help make a diagnosis.

Please take the time to contact your representatives with your story and why funding for Lupus is so important.

Contact Your Representative

Some of the things the Lupus Foundation is fighting for:

Funding at the NIH

Congressionally Directed Medical Research Program for Lupus

Eliminating Health Disparities in Lupus Initiative from the Office of Minority Health – This is a national health care provider education initiative to improve diagnosis and treatment of Lupus. Aka they are changing the way doctors are taught to diagnose and treat Lupus.

Continued funding for the add campaign, “Could I Have Lupus?” from the Office of Women’s Health. This program promotes public awareness of Lupus.

1 comment:

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