Three Uncommon Diseases

We have a very large extended family all over the country, as well as in Alaska, South Africa, and Czechoslovakia. Although we have had the normal share of heart disease, cancer, rheumatoid arthritis, ulcers, broken bones, etc., three uncommon diseases have afflicted our family in recent years…

1. Mom had a virus infection in Oct. 2008, then a month later she contracted pneumonia. These consecutive episodes caused her immune system to become vulnerable and made her the perfect target for irreversible cold agglutinin disease,  which was diagnosed in early 2009 by oncologist and hematologist, Dr. Zweibach, of the New Braunfels’ Cancer Care Center. Cold agglutinin is a rare blood disorder, a type of autoimmune hemolytic anemia, which can only be maintained with constant monitoring, expensive medication, and occasional plasma transfusions. These transfusions must be: a) specifically matched with certain quantities of antibodies that are in her blood at the current time, which can take several days to locate, and b) administered through a warming machine.

According to the Cold Agglutinin Disease Organization (coldagglutinindisease ), “Cold agglutinin antibodies are made in your bone marrow and high levels can occur when your immune system malfunctions. The body mistakenly perceives, as foreign, the very antibodies that it produces and sets up an autoimmune response thereby prematurely killing the red blood cells (hemolysis).” CAD causes constant anemia, which eventually affects the heart, brain, and other organs. Normal hemoglobin value is 12 to 16 for women. Dr. Zweibach is content if Mom’s stays above 10; if it falls below 8, she gets a major injection or a transfusion. The Cancer Care Center tests her blood every two weeks.

To keep CAD at bay, Mom has to stay warm year round, cannot have anything cold to eat or drink, and must take care not to get sick, because that takes her back to the beginning. At the first sign that she might have a cold or infection, she immediately starts taking an antibiotic that Dr. Zweibach has her store at home. Hopefully, this preventative measure will help to make CAD less severe whenever she’s ill.

kristina and mom at halloween 2012(Mom and Kristina at Halloween; Kristina made the Good Witch’s hat.)

2. After more than a year of tortuous pain, our 15-year-old niece, Kristina, was diagnosed a few weeks ago with reflex neurovascular dystrophy. Always active, Kristina (nearly 5’9″) has been a gymnast, cheerleader, and ballet dancer. (She’s also an artist and fashion designer.) Over a year ago, during a cheerleading competition, she fractured her left tibia. It did not heal correctly and that is when she began experiencing constant pain in her leg.

RND is a painful neurovascular disease ( that constricts the blood veins and reduces the supply of oxygen to the skin, muscles and bones. This lack of oxygen can cause acid to build up, which in turn results in new pain that is then sent back through the cycle to cause the neurovascular nerves to constrict the blood flow again. RND is more common in girls than boys and usually affects only one area of the body.

Without diagnosis and treatment, RND can cause a child to sleep more, stop all activities, use a wheelchair, and possibly become depressed ( The best known treatment is extreme physical therapy, which Kristina has begun in Austin twice a week. She goes through 5 to 7 hours of intensive physical, occupational, and pool or yoga therapy. She comes home exhausted. This therapy improves blood flow and breaks the RND cycle. While the therapy usually lasts between 2 to 4 weeks, Kristina will have to deal with it for six months. She may never be RND free, but hopefully her pain will recede to a tolerable level.

3. This week we learned that Danny’s older sister, Mollie, has cutaneous T-cell lymphoma, a slow-growing malignancy of the T-helper cells of the immune system. CTCL, a rare cancer of the white blood cells, primarily affects the skin. It involves the uncontrollable proliferation of T-lymphocytes into the epidermal layer of the skin, resulting in slightly scaly lesions that itch. Usually they are located on the torso, but can be present on any part of the body. Mollie’s began to show on her lower leg, then the knee, the thigh, and now a breast. Since she has always had rosacea, her CTCL was misdiagnosed by several dermatologists.

Mollie april 2012

The red rashy lesions progress to palpable plaques (hardened deposits) that are deeper red and have more defined edges. As the disease worsens, skin tumors develop that are often mushroom-shaped, which give it the name of mycosis fungoides. Finally, the cancer progresses to extracutaneous involvement, often in the lymph nodes or the cavities of the body. Average prognosis: life expectancy of 7-10 years, even without treatment. CTCL is usually seen in older adults and strikes twice as many men as women. Mollie is one of the 0.29 cases per 100,000 people per year in the U.S. Europe has fewer numbers. The cause is unknown at this time.

There are 4 stages of CTCL (CutaneousT-cell):
Stage 1 – Red patches and/or raised red patches on the skin. This stage is sometimes divided into 1A, where less than 10% of the skin is affected, and 1B, where 10% or more of the skin surface is affected;
Stage 2A – Skin symptoms are the same as in stage 1. Some lymph nodes are enlarged, but the lumphoma cells have not spread there;
Stage 2B – There may be one or more tumors on the skin;
Stage 3 – More than 80% of the skin is red;
Stage 4A – There may be any of the skin symptoms described above, plus there are lymphoma cells in the lymph nodes or high numbers of lymphoma cells in the blood, or both;
Stage 4B – There may be any of the above symptoms. Lymphoma cells may or may not have spread to the lymph nodes and/or blood. The lymphoma has spread to other organs in the body such as the liver.

Treatment varies, depending on the staging, from topical chemotherapy with nitrogen mustard (mechlorethamine hydrochloride) to phototherapy with oral psoralen and ultraviolet A to radiation. (lymphoma)

[Cancer is an insidious disease, which has many causes, types, and degrees. Although everyone has cancer cells in their bodies, most of the time nothing manifests into any type of cancer. However, once a person develops cancer, they can no longer be considered cancer-free…My radiology oncologist flat-out told me: “Don’t worry, you probably have 20 years before the radiation causes more cancer.”…It has been over two years since daughter-in-law, Amy, was diagnosed with IBC (amys-challenge ). She has gone through several treatments, multiple surgeries, a relapse last summer, and another round of radiation. In December, she was told there were no lesions on her PET (positron emission tomography) scan. Woo-hoo! But she will have to take antiestrogen medication everyday and be checked every six months for the rest of her busy life.]

harleys 2nd birthday

(Amy and 2-year-old Harley)



About Cyranette

I have been writing since I was 11 and am now a grandmother of 9. Aside from my family, I love writing, reading, movies, gardening, genealogy, and travel. I met my soulmate online and we've been married 19 years. I am a survivor of rape, abuse, and cancer. I believe in love, kindness, and common sense. I was born/raised in Indiana and have lived in Massachusetts, Texas, and California. I have visited: most of the United States, British Columbia, Germany, Austria, and Costa Rica. My husband and I would like to visit England, Europe, and New Zealand and to take a train ride along the Canadian/American border. I have written essays, articles, short stories, a romance novel, a self-help book, and several children's books.
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