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We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's life.

  1. Hey there, everyone! I'm Elle Cole, a proud mom raising teenage twin daughters in Maryland. Our journey involves navigating sickle cell disease and type 1 Diabetes with one of my girls. Beyond our medical adventures, we're a family that loves to write, explore nature through hiking, and indulge in the wonders of museums.

    My passion lies in sharing my experiences as a caregiver through my writing. It's my way of connecting, learning, and supporting others in similar situations. I'm genuinely excited to hear and learn from all of your stories. Let's keep supporting each other!

    1. Hello,

      I’m a 30 year old woman with a rare neurological disease. 10 years ago my symptoms were much more mild and I was told I likely had a rare form of hereditary spastic paraplegia but as my symptoms have progressed I have been reassessed as having early onset primary lateral sclerosis. I feel very isolated as I lived in a rural area and never encounter other people with neuromuscular disease. I work full time and will be starting grad school next year.

      1. Hi I'm Michelle I was diagnosed with Dermatomyositis in 2011. I also have calcifications in 1 breast and diabetes. I am here to see if anyone gets random lumps and muscle atropy in left thigh This is something new and no one seems to know what it is

        1. Hi, I’m not super familiar with dermatomyosistitis but that sounds like a lot to deal with.

      2. Hi I'm Lisa, take 2 😀

        I was diagnosed with stage 3 Inflammatory Breast Cancer (IBC) in May, 2019. IBC is a rare and very aggressive form of breast cancer that has a high rate of recurrence. It is very often misdiagnosed because it is rarely taught in medical school or only briefly mentioned. There are only a handful of specialized centers in the country that follow and maintain the specific standard of care for IBC.

        I had 18 months of active treatment beginning in early May 2019 with two different rounds of aggressive but standard breast cancer chemotherapy through September. I underwent a modified radical mastectomy in October and followed that up with 33 rounds of daily radiation over the holidays ending January 2020. All things considered, I sailed through my trimodal treatment relatively easily. When I finished radiation, however, I began targeted therapy that wouldn't end until November 2020. This targeted therapy caused me an immense amount of side effects beginning almost immediately. I soon had to reduce my schedule to part time, eventually turning to short-term disability. By the end of 2020, I needed long-term disability and haven't been able to work since. I have recently started a Facebook blog mostly as a therapeutic tool but also to raise awareness of Inflammatory Breast Cancer.

        Oddly enough, and I'm still waiting on blood work to confirm, it's quite likely that I have Mast Cell Activation Syndrome. I actually just found out by accident last week but it explains all of these seemingly unrelated illnesses and disorders I've been dealing with my entire life. It seems that it was probably flared up, if that's the correct term, from either my IBC diagnosis or the treatment or maybe just stress. Funny little story, I told my doctor that I suspected MCAS and he said how unlikely it was; he's tested hundreds of people in over 20 years and only one was positive. Then I listed everything, not just current symptoms and his jaw dropped. He said, "Hmmm, you might be right. Let's get that blood work."

        1. Yes, I suppose that's true as I added my name but it's not part of the link. I added my name as an afterthought so it would also come up when if/when people search just my name, too.

        2. Mimis IBC Daze (Lisa)
          Good plan to have added your name for search purposes!

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