Return to the blog

Return to the blog

Hello my patient readers!


I am sorry for my absence. I have had to deal with some health issues that have been extremely trying both physically and mentally. I haven’t been able to share much with the outside world, but I am ready to share now with chiari family, because I know you all struggle as well.

I haven’t wanted to tell anyone this, because it has been a very private experience between my husband and I. For those who know us, they know that we had tried to have children for a number of years. We stopped after I had my brain surgery. It just wasn’t safe anymore. As much as that sadden us, we decided to throw ourselves into our relationship and our advocating for chiari and eds.

Well, last month I was scheduled to see a new doctor for an issue I had been having that I will cover later. I don’t want to go too much into it, but after that appointment, we found out I had had a miscarriage. It crushed my entire world, and all we did was cry for days. We haven’t been ready to tell everyone yet. Not even family. I know people will mean well and say “oh, you can have another.” but for us, that just isn’t the case. Even if it was, we lost a CHILD. You can’t replace that. It is a hole in your life and in your heart that will never heal, made worse by the fact that we will never have another. I have been having a very hard time processing all of what goes into a miscarriage. So, please be kind and patient with me as my husband and I grieve the loss of our child.


Our other news is, I was diagnosed with a new condition called Systemic Mastocytosis. You can read a little more about it below, and I will also add links at the end. It’s a very complicated condition that we are still trying to learn about. I have had a LOT of testing so far, and will have to have more. Sometime in the next few weeks I will have to have a bone marrow biopsy done to determine if I need to have chemotherapy yet.

I will keep you all updated on what is going on as soon as I know.

Also, please don’t forget that September is Chiari Awareness Month. Unfortunately, I did not have the strength this year to do as much advocating as I would like, and I wasn’t able to pursue a new resolution for 2016. Feel free to share your photos of your purple pride, and your Chiari Walk information so I can help spread the word, and hopefully we can beat last years totals!

I will be adding some links and new doctors to the doctors tab. For more information on mastocytosis and other chronic illness, please keep checking back on the blog, and read up on Chiari Gear. She has a lot of great information about Chiari and other chronic illnesses/diseases along with some great awareness gear!


Thank you for your patience while I work on getting myself sorted out!

Stay strong and Conquer Chiari!


About Mastocytosis

Mastocytosis describes a group of disorders that are caused by too many mast cells in the body. The number of mast cells in the body can increase as a result of some non-cancerous (benign) or reactive conditions. However, certain types of cancers begin when healthy mast cells change and grow out of control.

There are 2 general types of mastocytosis:

  • Cutaneous Mastocytosis. This type of mastocytosis involves the skin.
  • Systemic Mastocytosis. This type of mastocytosis involves the entire body.

Cutaneous Mastocytosis

Cutaneous mastocytosis is an increase of mast cells in the skin. About 90% of people with mastocytosis have the cutaneous type. Subtypes of cutaneous mastocytosis include:

  • Urticaria pigmentosa. This is the most common type of cutaneous mastocytosis. The main sign of urticaria pigmentosa is the appearance of tan or red-brown spots on the skin. These spots usually develop on the midsection of the body first and then spread over the rest of the body. A person with this type of mastocytosis may also experience nausea, vomiting, and diarrhea.
  • Solitary mastocytoma. This type of mastocytosis is more common in infants and children than in adults. It usually causes a large nodule, about 3 to 4 centimeters (cm) in diameter, to form on an arm or leg. This nodule is called a mastocytoma.
  • Diffuse erythrodermic mastocytosis. This type of mastocytosis is found most often in children younger than 3 years old. Diffuse erythrodermic mastocytosis may not be noticeable when a child is born, but it can later show up as a rapid thickening of the skin. Symptoms of systemic mastocytosis (see the Symptoms and Signs section) and blisters are also common.
  • Telangiectasia macularis eruptiva perstans. This type of cutaneous mastocytosis develops mainly in adults. The most common sign is lesions that do not itch and are smaller than those of urticaria pigmentosa.

Systemic Mastocytosis

Systemic mastocytosis involves internal organs throughout the body, including the gastrointestinal tract, bone marrow, liver, spleen, and lymph nodes. Lymph nodes are tiny, bean-shaped organs that help fight infection. About 85% of the time, urticaria pigmentosa (see above) develops first.

Depending on the number of mast cells in an organ, the disease is classified as either indolent, which means it is slow growing, or aggressive, which means it is fast growing. As the number of mast cells builds up in an organ, the symptoms of the disease may get worse.

Systemic Mastocytosis can become cancerous. The risk of systemic mastocytosis becoming cancerous is 7% when the disease begins in childhood and as much as 30% in adults. Mast cell leukemia involves the blood, while mast cell sarcoma involves the body’s soft tissues.