Frizzled, Frazzled, Done

As lupus patients, I hate to say, we have experienced more emotions and feelings than most others we know. I hate to say this because when I think I have it all More »


Continuing in our theme of emotions:   I suspect that every lupus patient has felt abandoned at some time during their life with lupus. In fact, I’m fairly certain of that statement. More »

Can You Be An Emotion?

Can you be an emotion, or more specifically, can you be your emotion(s)? I don’t ask this lightly, but with all seriousness. Think about it for a couple of moments. Do you More »

Will the FDA Listen to the Lupus Community? It’s up to You!

The Food and Drug Administration is about to embark on a project to get patients’ take on chronic illnesses, and lupus is not (yet) on the list! But you can change that. More »


How many times have we as lupus patients been discouraged with something regarding our illness? We are discouraged when we don’t feel well. We are discouraged when we can’t do what we More »


Category Archives: medical information

Will the FDA Listen to the Lupus Community? It’s up to You!

The Food and Drug Administration is about to embark on a project to get patients’ take on chronic illnesses, and lupus is not (yet) on the list! But you can change that. The following is an appeal LFNC is actively joining as part of the Lupus Research Institute National Coalition.

The FDA is currently inviting public comment on what disease areas it should include in public meetings to be held in the next couple of years. So let’s get lupus included!

We’re urging everyone to write to the FDA about why lupus must be included.

Please hurry; you need to respond by December 5.

What You Need To Do (click here for sample letter):
Use the outline below as a guideline to write your own letter, in your own words.
The FDA is using four criteria to determine what conditions it will hold meetings about. In your letter, please describe your own situation or that of a loved one to illustrate how lupus meets the following criteria:
Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;
Disease areas for which aspects of the disease are not formally captured in clinical trials;
Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives; and
Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly).
Must include that you are responding to Docket No. FDA-2012-N-0967.
Submit electronically using this link.  Or, mail your letter to: Division of Dockets Management (HFA- 305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852
Once again, a sample letter is available here. Please let us know that you have contacted the FDA by replying to this post.


© The Lupus Support Network, Inc. and Wanda M. Argersinger

All Rights Reserved

What’s In Your Medical Records?

Do you know what’s in your medical records? Knowing what is in your records can play a big part in not only your future treatment but can also give you the information you need to ask the right questions of your doctor, which believe it or not, can lead to critical testing and proper treatment for many conditions. Every patient has a right to know what is in their medical records and dispute it if necessary.

In the past few months I have heard from many patients who have horror stories to tell about getting copies of their medical records and being shocked to read what their doctors put in their files. Remember, your medical records are much like your credit history and follow you from now until who knows when. All future physicians will seek copies of your current medical records, so you should guard them and ensure accuracy with vigilance.

Perhaps it is the nature of the lupus and its difficulty in diagnosing that leads to the erroneous information that is being placed in files. Or perhaps it is put there by physicians who are not specialists in the diagnosis and treatment of lupus who put incorrect information in a patients file. It doesn’t really matter why, it only matters that it is there and it can harm you and your future treatment for not only lupus, but for many other illnesses.

One particular patient was beyond shock when she read in her medical records that she had been diagnosed with a psychiatric disorder. This was only discovered when she finally read her records and the physician notes. It was the notes that disclosed this fact. She took immediate action to correct this unsubstantiated diagnosis. She had a letter written by her current rheumatologist and had it sent to be included in the records of the physician who put the “psychiatric” note in her file.

Another patient, who had not yet been given a definitive diagnosis, requested a copy of her medical records because her long time physician was closing his practice. It was only then that she found notes stating that her rheumatologist wrote a letter to her internist stating things that were totally wrong and that he had run tests that had never been done. This particular patient had been treated by the rheumatologist for over 10 years, yet the rheumatologist stated in his letter that the patient had only spoke of certain symptoms in the past 2 years. None of these errors would have been noted or corrected if the patient had not reviewed her medical records.

The last patient I will speak about was gathering and reviewing her records before she was sent to a tertiary treatment center. Among the records were 3 EKG’s all from the same date. On the top of the EKG’s it was noted that the patient had had a previous infarct, which means a previous heart attack. The patient was not aware of this so took copies of the EKG’s to her physician and asked for an explanation. Her current physician did another EKG to verify the results, which were once again abnormal. Further tests were ordered. The results were conclusive that the patient has limited blood flow to her heart and was scheduled for additional testing and treatment. In this particular case it is unknown if the abnormal EKG results would have been acted upon without the urging of the patient. In essence, this patient may have saved her own life. Limited blood flow to the heart will eventually lead to a heart attack which the patient may or may not have survived. They say that a little knowledge is a dangerous thing. In this case, limited knowledge and the desire to know more along with the willingness to ask questions really benefitted the patient.

These are just 3 of the many cases involving medical records and the importance of knowing what is in them. They are your records. It is your health. You need to stay aware of what is in them, and be sure to correct errors, ask questions, and know that ultimately you are the one who will be affected by what is written and stored in your medical file.

From the Life and Mind of
Wanda M. Argersinger, Executive Director
The Lupus Support Network
All Rights Reserved 2009