Mysterious Diseases

Many people suffer from mysterious diseases that doctors cannot diagnose. Family and health care workers wonder if they are truly sick, hypochondriacs, or suffering delusions. Some go on for years with no diagnosis and if they are finally diagnosed, it’s too late. Their health is a disaster and beyond fixing.

Millions of children have mysterious diseases that have no diagnosis, or if at all come many years later. Some conditions are so new they have no names. Some that do have names are Blackfan Diamond anemia, Hermansky-Pudlak syndrome, periodic paralysis. Some diseases may strike just a few hundred people. They can mimic more common ailments such as high blood pressure and fatigue. Patients who have these diseases are often misjudged and doctors and families wonder if all the symptoms are in their head. Usually when the patient is diagnosed it’s too late, the damage has been done. All sorts of complications can accrue and by the time patients know what it is, they are medical disasters.

Meanwhile the National Institute of Health revealed in its new undiagnosed Diseases Program a center for studying and eventually treating patients with unidentified diseases. Truman Gahl who heads the program said,  “We wont be able to help everyone who seeks our care, a lot of people will hear this and think, ‘oh, they will have a diagnosis for me, but the program is equipped to see no more than 100 carefully chosen patients a year.” The center has only 3 full time staffers, two nurse practitioners and a schedule which is very busy. They received hundreds of calls the first week from desperate patients in and outside the U.S.

Everyone who works in this program have full time jobs outside the program so it will be slow going, but at least something is being done to help patients who have had no help before. It’s a step in the right direction and perhaps one day these people will have a diagnoses. New drugs are also being developed every day for rare diseases. One diagnosis has been given a name “Hunter syndrome” Teddy Townson a ten year old boy was diagnosed with Hunter syndrome, a metabolic disorder that effects hundreds of Americans. He is taking Elaprase, a newly approved orphan drug that is the only drug on the market for this disease. He has improved but nothing is certain.

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  1. One of my favorite subjects obscure diseases with Ebola Virus being my favorite. Thank you so much for writing this. I jotted down the diseases you mentioned, so I can do some research on them.

  2. writing is very good and beneficial to share :)

  3. Yes, health is the greatest wealth!

  4. Thanks so much for sharing this, Tulan. Very informative:)

  5. This is a very good eye-opener.

  6. Very interesting article. Great job.

  7. What a fasinating article I look forward to many more
    Best Wishes

  8. Good work thank you for sharing.

  9. Hope more mysterious diseases can be cured.

  10. Hope mysterious disease will not be mysterious again in the future.

  11. tulan, thanks for this information, most of us know someone who seems to be malingering, but who knows what their health problems are?

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