Of mushroom allergy and Perthes disease

There just appears to be no end to  some very weird ailments and allergies around the world. Because  I constantly have to explain autism to everyone who meets my son, I’m also keen to know about other conditions that I don’t know about. I met this lovely woman at the beginning of the year at Sibane Hotel in Swaziland. She was on holiday with her family, and we struck up a conversation. My son had slipped out of the room and went into the deep end of the pool, almost drowned,  and the woman and her husband were there to help him. I explained to her that my son was autistic, and she went on to tell me about conditions that she also has – mushroom allergy and Perthes disease.

Lindiwe told me that she had a severe allergy to cooked mushrooms, an  allergy she realised in her adult life. The condition is not communicable or hereditary but is a fungal infection. If she ate a mushroom, her tongue would immediately swell up and her throat would close up. “From an early age I suffered from sinus, was constantly on nasal sprays which blocked my sense of smell until 6 years. Now my mushroom allergy became real as I could now smell mushrooms and would have a reaction from their aroma,” she said. Lindiwe said she now goes into anaphylatic shock (often life threatening reaction), which has caused her to carry ephipen injection, just in case she needs it. Unfortunately with an anaphylactic shock reaction an antihistamine does not work for her, an ephipen injection is the only form of medication that the reaction responds to. She would need to rush to the ER for further treatment.

Having this allergy has caused Lindiwe to always be on pins and needles when going to restaurants because she can never tell if there will be mushrooms being served or not. She said visiting her friends was much easier as they already knew and were accommodating.  “Due to the seriousness of my allergy, I have learned to ask hosts in advance to not have cooked mushrooms in the house. However, with people I am not acquainted with, I have often had to rush off as my reaction kicks in.  At my office, they stopped serving mushrooms if I am attending a particular function, this includes client dinners.”

To be on the side of caution, Lindiwe always tells new people  she meets about her allergy, and if they are people she’s close to, she also tells them where she keeps her medication should she have a reaction. She said most people are shocked as they cannot believe such an allergy exists as it is so rare. Lindiwe encourages people to be more sensitive and accommodating to people with life-threatening allergicreactions, no matter how weird and strange they sound. The Asthma and Allergy Foundation of America (AAFA) reports that food allergies can cause respiratory, digestive and skin health symptoms.
People with such mushroom allergies may also be allergic to other fungal forms, such as molds or yeast. Ingesting foods that carry molds, such as cheeses or grapes, may trigger allergy symptoms. The National Institutes of Health (NIH) report that inhaling airborne spores from molds or mushrooms can also make some patients ill.

Perthes disease

Perthes disease is a bone degenerative condition affecting mostly children between the ages of four and 10 years of age.  It is more common amongst boys. Lindiwe remembers that as a young girl she was constantly in pain and was often in hospital for observation. 

She only got an official diagnosis when she was  19, at which time she was tired of taking painkillers. Having Perthes disease can be debilitating, because you can’t run or jump and are often in pain. After all her efforts to get treatment  came to nothing, she eventually went to Orthopeadic surgeons and discovered she had Perthes disease, and most importantly how to fix it. In August 2000, she had her first total hip replacement. “Best thing I ever did for myself!” she said.  “The operation is complicated as a lot can go wrong, but praise God mine was successful,” she added. Full recovery took about four months. Lindiwe said having a hip replacement stopped Perthes disease it from turning into severe arthritis.

“I have met a few people, some refusing to have a hip replacement. Having a prosthesis changes your life and becomes a cycle as you have to replace it every 10 to 15 years because the prosthesis has  a lifespan,” she said.

Despite having such complications in her life, Lindiwe just oozes positive energy and the allergy has not done much to dampen her zest for life. She plays golf, enjoys going on holiday with her family, and swims and hasa job that she loves. “I do eat out a lot, but generally avoid breakfasts, especially buffet breakfasts as they are most likely to serve mushrooms. When going out with friends, they are very considerate so none of them will have mushrooms in my presence.” I am very cautious with my life. From year 2000, my greatest fear became “falling”. So I do not run or jump and I walk slowly to avoid the risk of falling. I also tell people about Perthes disease and make them aware of the symptoms, especially if they have young children. I want people to know that it it a complex disease, it exists and there is a cure for it.”