Tag Archives: orphan disease

My Valley Fever and Sweets Syndrome Journey /Chapter 2

**NOTICE**Some photos of rash are included**

After I wrote my first post I realized something.  I had not known what Valley Fever was, in fact, I had never heard of it.  Sweets Syndrome had the same effect…I knew nothing.

In fact, no one in the local hospital was aware of either one of them.  I decided that it might be wise to explain what each disease/syndrome actually was and how it manifests itself.

Sweets Syndrome a rare skin condition. Its main signs include fever and painful skin lesions that appear mostly on your arms, neck, head and trunk.

The exact cause of Sweet’s syndrome isn’t known. In some people, it’s triggered by an infection, illness or certain medications. Sweet’s syndrome can also occur with some types of cancer.

The most common treatment for Sweet’s syndrome is corticosteroid pills, such as prednisone. Signs and symptoms often disappear just a few days after treatment begins, but recurrence is common. from mayoclinic.org

Valley fever is a fungal infection caused by coccidioides (kok-sid-e-OY-deze) organisms. It can cause signs and symptoms such as a fever, cough and tiredness.

Two coccidioides fungi species cause valley fever. These fungi are commonly found in soil in specific regions. The fungi’s spores can be stirred into the air by anything that disrupts the soil, such as farming, construction and wind.

People can then breathe the fungi into their lungs. The fungi can cause valley fever, also known as acute coccidioidomycosis (kok-sid-e-oy-doh-my-KOH-sis). Mild cases of valley fever usually resolve on their own. In more-severe cases, doctors treat the infection with antifungal medications. from mayoclinic.org

Valley Fever has symptoms that are similar to COVID-19.  I was tested a few times for COVID-19 as they continued to try to find out what was wrong with me.  It also can be similar to TB, which I was tested for as well. X-Rays proved that I did have pneumonia in my left lung, that is normally the first organ the fungus makes itself at home in.

A punch biopsy proved that part of my rash was Sweet’s.  Although extremely rare, sometimes Sweet’s shows up with Valley Fever.  I have been told by my Infectious Disease doctors and Dermatology team that this was my body’s way of fighting the cocci fungus.

The beginning….much of it has faded now. The legs were the last to show signs of the disease and are still very dark patches, but the swelling is much better.

The fungus stays in your body forever, and the anti fungal medicine is used for months, sometimes years, to allow it to become dormant of sorts.  It can disseminate, but usually will do so in the first 2-3 weeks of infection. https://rarediseases.info.nih.gov/diseases/9525/coccidioidomycosisValley Fever is called an “orphan disease”.  There is not a lot of money put into the research or prevention of it. Sweets Syndrome is considered a rare disease. https://rarediseases.org/rare-diseases/sweet-syndrome/

I am learning a lot, http://www.valleyfeversurvivor.com has been a wonderful source for information. I highly recommend this site to learn about Valley Fever. Since my Sweets most likely came from the VF invasion, I have not studied it very much.

The one thing I have not had to learn is the faithfulness of God.  It has been a rough year for everyone in some manner.  When I was at my lowest, when I was not sure if I could get through the pain and uncertainty, the Lord never left me.  I knew that whatever the outcome, it would be okay.  No matter.  

He was who He always has proven to be…my rock, my strength, my peace and my salvation.

May you be encouraged today….in whatever you face!

Tammy