All Updates

Diagnosis Explanation

Some background and general info on Systemic Mastocytosis (SM). SM ...

Second Opinion & request for donations

My hematologist referred me for a second opinion since the disease ...

Treatment Update

I have been back on the Ayvakit since Sept 11th, at 100mg, and I’m ...

Disease progression

Sorry for the break in updates, I had a crazy and traumatic hospita...

Back in the hospital

Since leaving the hospital I have struggled to drink enough to stay...

Home

I got home on Friday. I left with symptoms minimally improved; stil...

Hospitalization Update

Not much has changed symptoms wise, I'm still getting nauseous when...

Hospital Day 2

The Hematologist came by this morning and informed me that she had ...

Back in the hospital

I had to come back to the ICC on Saturday because the nausea worsen...

Home from the Hospital

I'm home from the hospital. Drs weren't able to do much to help my ...

Hospitization update

Drs are treating me symptomatically. I'm still getting nauseous aft...

Mastocytosis Flare/ICC Visit

Since my visit to the ICC last week I have had nausea every time I ...

Cincinnati Appt 5/21

Cincinnati appt went ok. No new insights at this time. My doctor is...

IVIG Infusion- Day 9

Today was day 9 of IVIG infusion. I started back in January every w...

In Support of Shannon Dingey

The Support Registry was just created.You can see all support oppor...

Support Registry

Browse all the options to help, in one place.