Attention All Lupies :) Wanna Make A Difference??

I am 22 and was recently diagnosed with ANA NEGATIVE SLE after many years of suffering while trying to attain a diagnosis all because of a negative ANA. I also have a blood clotting disorder called Protein C Deficiency with Factor Five Leiden Mutation "sticky blood". My great grandmother, grandfather, mother, and twin sis all have the blood clotting disorder as well and my mom has Subacute Cutaneous Lupus.

I had one month left before graduating school when I got very very ill and was debilitated in bed for many months. Due to such a nightmarish journey leading to a diagnosis and plenty of suffering along the way, my passions in life have shifted. I feel like its my calling to go back to school and become a rheumatologist which is exactly what I'm going to do. There needs to be a change in the medical field. I'm going to be that rheumy that actually listens to my patients, have a good bedside manner, and have empathy for my patients. I'm sick of all the b.s. that comes with attaining a diagnosis so that us sickies can get treatment before damage is done.

The guys in the lab coats looking into microscopes are not solely the ones responsible for helping discover faster and easier treatment. The individuals responsible are you and me, the people who are actually suffering from this awful disease. We can not be afraid to speak out about what we experience with this illness. It is only by us coming together and sharing our stories that we can make a change in the system as well as helping other lupies, new and old to the disease know that they are not alone and that we are all in support of one another.

With that being said I have started a new blog for my fellow lupies. All you have to do is email your story (when it started, your symptoms, what it feels like,how you've coped..ect.) to: [e-mail] and your story will be posted on laslobasanonymous.wordpress... for other lupies new and old to gain knowledge and hope based on your journey and hopefully doctors and people studying our disease will gain insight and new knowledge based on your stories as well. Don't be afraid to speak out!

[IrishLupie]

Hi haybelle. I similarly have Negative ANA SLE and diagnosis was a delightful romp (sarcasm). I really admire your desire to become a doctor. That's my dream but it will never happen for me because of the hours doctors are forced to work. Good luck with it.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Unfortunately, doctors are still using a classificatory system to diagnose lupus - this is the "4/11" symptoms. However, this classificatory system was never intended to diagnose individuals with lupus. It was designed to try and ensure the same kinds of patients were used in clinical studies. Diagnosis of lupus can be very difficult, especiallt for those with sero-negative ANA.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

With good wishes,

Ros