Other family members with different rare disease?

[geo627]

I was wondering if there is anyone else out there who has another member of your family (in the same house) that also has a rare disease?

My husband has been diagnosed with sarcoidosis this past year.  

According to the Mayo Clinic..."Sarcoidosis (sahr-koi-DO-sis) is characterized by the development and growth of tiny clumps of inflammatory cells in different areas of your body — most commonly the lungs, lymph nodes, eyes and skin.  Doctors believe sarcoidosis results from an abnormal immune response — most likely to something inhaled from the air — but just what triggers this response isn't known. The course of sarcoidosis is variable from person to person."

I have read that like, IGM, the cause of Sarcoidosis is unknown.  It is believed to be due to an exposure to something.  Also, like IGM, it appears to have something to do with your immune system...the following was also taken from Mayo Clinic... "Normally, your immune system helps protect your body from foreign substances and invading microorganisms, such as bacteria and viruses. But in sarcoidosis, some immune cells clump together to form lumps called granulomas. As granulomas build up in an organ, the function of that organ worsens."

When I see the word "granulomas" I cannot help but wonder if the two diseases are related, or in other words possibly caused by the same exposure, etc.?  

Fortunately, my husband's only complaint with this disease is a nagging, dry cough, but PET scans, CT scans, etc. have shown some areas where the nodules or granulomas are seen.  They have performed biopsy on his esophagus, small intestine, stomach and lymph nodes behind his clavicle.  All biopsies have ruled out cancer, Thank God!!  

I was just curious to see if there is anyone else out there who isn't the only one within your household to acquire a rare disease?  

  

[geo627]

Thank you for your input, Red & JoJo.  I cannot imagine that they did not test me for sarcoidosis.  I believe that they tested me for everything under the sun.  My breast specialist does know about my husband having the disease and has just recently gave me the name of a pulmonologist that is a good friend of his.  My husband has been under the care of another pulmonologist for the past year with no progress or answers what-so-ever, only more questions for us.  My husband's maternal grandfather also had sarcoidosis; however, I am told that it is not hereditary.  My breast specialist has said that there basically is not enough info. out there to prove that it can be passed through genetics, but that it is known to run in families?  I just worry that both the IGM & the sarcoidosis may be due to something that each of us have been exposed to, perhaps within our home, and pray to God that, if so, whatever it may be does not effect our daughter!  

[JoJo45]

Hi Geo-

I would definitely mention to your doctor that your husband has sarcoidosis, I was also tested for it, as it is, as Red mentioned, sometimes a cause of GM, or so closely related that it may also be present...I am not an expert, but do know they are both granuloma based diseases (as is TB), and I know that while rare, it is one of the default screens they do for us GM patients so I would think definitely worth mentioning.

I have a sister who has had her very happy, full life, basically brought to a halt with fibromyalgia and chronic fatigue.  They don't know much about these diseases either (and they are incredibly frustrating to have as many think they are not real, that somehow a number of very well adjusted, happy, achievers, suddenly choose to drop out of their lives and stay in bed -- giving up careers, althletics, relationships they have striven for their whole lives...); anyway, another very poorly understood set of diseases, but mainly believed to be caused by a retrovirus that somehow kickstarts the immune system in to operating improperly with devestating consequences.

I do not think it is coincidence that a family member has also had her immune system go wacky - I think one day they will find genetic predisposers to many of these illnesses.

Maybe you have already been tested for sarcoidosis?...anyway sorry to hear that your loved one is also dealing with a health problem.

Jo

[Red11483]

I know my doc tested me for sarcoidosis in the beginning of my diagnosis b/c it can be a cause of GM sometimes, were you ever tested yourself for this. I was negative for it.

My father has multiple medical problems and we used to joke what a rare case he was but guess now i am one too. He had ulcerative colitis and chrons til having multiple resections of his intestines and now he has a colostomy but it too isnt normal it has a pyraderma and fistulas. He also has diabetes, sleep apnea, high cholesterol, multiple allergies, and blood clots in his superior vena cava and brachial cephalic.

My maternal aunt has a disease there are less than 10 known cases of in the world and she is the oldest living. Its got a name a mile long but basically she has multiple and  huge moles than cover her body. I honestly never noticed them as a kid til she had one of them removed on her cheek but others people usually do. She has one that goes from her mid back to behind her knee for example. She has had breast cancer twice and now a cancer in her adipose tissue that is somewhat rare.  

My mom has pretty common health issues other than a pelvic kidney.

I dont know never thought about the connection but anything is possible considering there is so little info out there.