Tag Archives: Lake County

Education, Information

HEMOPHILIA: “A ROYAL DISEASE”

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HEMOPHILIA is a rare blood disorder in which the patient’s blood does not clot normally because it lacks sufficient blood-clotting factors. An inherited disease, it is usually passed from mother to son. Because it was prevalent in European royal families, it is also known as “a royal disease.”

According to https://hemophilianewstoday.com/2017/05/24, it is believed that Victoria, Queen of England, was a carrier of hemophilia and that she passed the disease onto three of her children. Prince Leopold died at age 30 from a post-accident hemorrhage. Princess Alice and Princess Beatrice married royalty in other European countries.

Princess Alice, a hemophilia carrier, had a son who died from the disease in early childhood. One of her daughters, Irene, married Prince Henry of Prussia. She passed the gene to the German royal family. Alice had two sons, one of whom died at age 4. The other son died at age 56.

Alice’s second daughter, Alix, married Tsar Nikolas II of the Russian royal family. Tragically, all of their children were killed during the Russian revolution. The mutant gene ended there.

Princess Beatrice’s daughter, Victoria Eugenie, married King Alfonso XII of Spain. They had five children—one daughter and four sons. The daughter was a carrier of the hemophilia gene, but her children did not inherit the disease. Two of the four sons had hemophilia, but they died without having children.

It is interesting to note how the mutant gene, hemophilia, affected history. Today, hemophilia has affected people from all walks of life including actors, sports legends, and ordinary people. Richard Burton, the British actor and husband of Elizbeth Taylor, had hemophilia. In 1964, he and Elizabeth Taylor set up the Richard Burton Hemophilia Fund. He died in 1984 from a stroke at the age of 58.

Cyclist Barry Haarde is a hemophilia advocate who has cycled across the United States twice to raise awareness for the disease. He was infected with HIV and hepatitis C during a blood transfusion more than thirty years ago. He is the only man with HIV, hepatitis C, and hemophilia to have cycled across the country.

Ryan White was diagnosed with severe hemophilia A at three days old following extensive bleeding after his circumcision. During the 1980’s he contracted AIDS from unscreened blood transfusions, and he inadvertently became the poster boy for AIDS.

If you have a family member who suffers from hemophilia and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission. For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski

Education, Information

STIFF-PERSON SYNDROME

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When Laura was thirty years old, she began having episodes of muscle stiffness in the trunk of her body and in her limbs. During these episodes, she would also have severe and prolonged muscle spasms in her legs. As a result, she fell several times. She also suffered from anxiety and depression.

Laura made an appointment with her primary care physician. After ordering some initial testing, the doctor referred Laura to a neurologist. Laura also saw physicians in several other fields including allergy and immunology, rheumatology, and orthopedic surgery. Three years later, she was diagnosed with Stiff-Person Syndrome.

Stiff-Person Syndrome, originally called Stiff-Man Syndrome, is a rare disease which affects only one in a million people. The syndrome affects twice as many women as men. According to the Cleveland Clinic article “Stiff-Person Syndrome/Cleveland Clinic” at https://my.cleveland clinic.org/health articles, it is characterized by “muscle stiffness in the trunk and limbs and heightened sensitivity to noise, touch, and emotional distress, which can set off muscle spasms.” Patients may have abnormal posture, such as being hunched over. Muscle spasms and muscle rigidity may cause patients to fall.

Individuals usually start experiencing symptoms between ages thirty and sixty. Because the disease is so rare, getting a diagnosis can take years. According to the Cleveland Clinic article, “One commonly used tool is a blood test to detect the presence of glutamic acid decarboxylase (GAD) antibodies. About 60-80% of affected people have antibodies against GAD that can be detected on a blood test. Therefore, the absence of GAD antibodies does not rule out SPS, but the presence of high levels of GAD antibodies in people with symptoms of SPS strongly supports the diagnosis.”

Treatment of Stiff-Person Syndrome focuses on the specific symptoms present in each person. Doctors may prescribe benzodiazepines, diazepam, or baclofen to treat muscle stiffness and spasms. Pain medications and anti-seizure medications may also be effective for some patients. In addition, doctors may prescribe antidepressants to relieve the anxiety and depression associated with Stiff-Person Syndrome.

If you have a family member who suffers from Stiff-Person Syndrome and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission.

For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski

Status

LUPUS: “THE WOLF”

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Forty years ago, a teacher at a Catholic elementary school invited the faculty members and their husbands and wives to a Christmas party in her home.  It was an opportunity to socialize, to have fun together.  The women wore their long dresses, and the men wore suits.  Everyone was excited to attend.

Since these faculty members worked together every day, they were at ease with each other.  As each couple arrived, the hostess and guests greeted them.  The house was filled with chatter and laughter.

When all guests had arrived, the hostess announced that she had a surprise for them.  She had enlisted the services of a palm reader, who would tell their futures.  Each person would meet individually with the palm reader in a separate room.  The palm reader would examine the individual’s hand life lines, love lines, and give a reading.  It was simply a party game.  What could go wrong?

Everyone was having a good time until Marie came out of her meeting with the palm reader.  Marie’s face was ashen.  She walked directly to her husband and whispered something to him.  The room became unnaturally quiet.  It was as if all of the air had gone out of a balloon.

Apparently, Marie had received bad news, very bad news.  The palm reader had told Marie that she had lupus, a fatal illness.  How would a palm reader know that?  And what is lupus?

According to WebMD, “Lupus is one of many disorders of the immune system known as autoimmune diseases.  The (patient’s) immune system turns against parts of the body it is designed to protect.  This results in inflammation and damage to various body tissues.  Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain.”

A National Resource Center on Lupus article at https://www.lupus.org/resources states that lupus was identified in the classical period (1230—1856).  The word lupus (Latin for “wolf”) is attributed to the thirteenth century physician Rogerius who used it to describe the erosive facial lesions which were reminiscent of a wolf’s bite.

If you have a family member who suffers from lupus and needs private duty nursing, call American Home Health at (630) 236-3501.  The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs).  Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee.  American Home Health is licensed by the State of Illinois and accredited by the Joint Commission.  For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski