One Patient's Positive Perspectives

Sign the Lupus Awareness Pledge

How does a person know if they have lupus?

While self-diagnosis is never a very good idea, everyone should know enough about lupus to recognize possible symptoms that call for a serious conversation with their doctor.  One out of every 150 people do have lupus, and 90% of those people are women.  We all know someone who has lupus, and some of those people may be in our own families.

First, if a woman has several symptoms that are commonly associated with lupus, it is time for a conversation with the doctor about lupus.

Second, if a woman has lupus symptoms, and finds out that other family members have lupus, or even other auto-immune diseases, its important that their doctor knows other family members have lupus or similar conditions.  Relatives of people with lupus have an increased risk for lupus, and relatives of people with any type of auto-immune disease have a higher likelihood of other auto-immune diseases.

This week, some of my out-of-town relatives dropped in for leisurely Saturday afternoon lunch.

A lovely young relative sat at my kitchen table, eating her sandwich while telling me about recurring pain she was experiencing, and problems she is having with her kidneys.

She had already started seeing a nephrologist for the kidney problems, and was considering whether to follow through on kidney needle biopsies the nephrologist ordered.  After hearing her story, I encouraged her and her mother to put their apprehensions aside, and to schedule the biopsies.

As the afternoon wore on, she told about several other symptoms that, together with kidney problems, would cause any alert family doctor to send their patient for lab work and a follow-up with a competent rheumatologist.  Her symptoms included protein in her urine, mouth ulcers, joint pain, recurring round rashes on her legs and recurring inflammation and pain in her salivary glands.

I also encouraged her to get a rheumatologist on board as soon as possible.

Over lunch we chatted about the various other members of our family with other auto-immune diseases, such as rheumatoid arthritis, auto-immune thyroid disease, fibromyalgia, auto-immune psoriasis, allergies and asthma.  Unfortunately, our family has an auto-immune rich (or poor) gene pool.

She told me that her nephrologist had already begun to suspect that her kidney problems were being caused by “something autoimmune.”  (If she is reading this post, I sincerely hope it will not embarrass her that I am anonymously mentioning her situation.)  I think telling her story may help someone else.

As I spoke with her and her mother about my lupus, it became obvious to them that she may be at risk for lupus.  She did  not previously know that her various symptoms are common to lupus.  Her parents knew something about lupus.  However, even this knowledge was not enough to help them suspect that their daughter might be at risk for lupus, also.

I can see that my mission to increase lupus awareness, even right in my family, is far from over!

So, I emailed this wonderful young relative a link to the Lupus Foundation of America website, and the link to my lupus blog, so that she can start to do a little research and learn more about lupus between now and her next doctor appointment.  Now, she has enough lupus awareness to tell her doctor about her other possible lupus symptoms, those that she had previously completely disregarded as having no possible relationship to her recurring kidney problems.

Now, she knows that all her symptoms might have a common cause.

I sincerely hope my suspicions are wrong, and I pray that she does not, in fact, have lupus.  However, if her doctors eventually decide that she does, I will not be at all surprised.  If so, it is ultimately best to find this out while she is young.   Early diagnosis and treatment would give her the opportunity to properly manage it and reduce any potentially disabling impacts it could otherwise have on her life if it went undiagnosed and untreated.

How fitting it was, that we had such an important family conversation about lupus during Lupus Awareness Month!  The knowledge she gained this week about lupus could have potentially life-changing impacts.

My lovely young relative is a classic example of the great need for improved lupus awareness.  She may not end up having lupus at all, but her symptoms include the classic list of things that should send any patient to their doctor with the important question, “Someone in my family has lupus, could I possibly have lupus, too?”

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