Tuesday, October 15, 2013
A patient walks into a Drs office and says," I have Mito." Most likely the Dr. will say," nah, you don't." They don't really believe in Mitochondrial Disease. Most don't, though there are a few who are educated,even then they struggle with all the zillion presentations and variables. IF they do believe in Mito, they usually only believe the most severe onsets, therefore it is impossible for Abby to have it. A patient walks into the Drs. office and says," I have HIV," Does the Dr. say," Nah, you don't?" Probably not. I bet they would believe you on your word. With Mito you can even provide lab results, genetics, biopsy findings, and they simply don't believe it.
There are many different types of Mitochondrial Depletion syndromes. It seems the one that most Drs. are familiar with is the type that affects the liver and the children rarely make it more then a couple years at best. When if fact, they are finding more and more older children,teens and adults with Mitochondrial Depletions who have a much milder disease course.
A couple months ago now Abby had some immunological labs that came back that are similar as to what are found in HIV positive patients. Not exactly the same, but close enough to warrant a HIV test to rule it out.
It was almost a relief when he said we ought to test her for HIV. Really. It did not bother us in the least.
Over the last couple years as I read about symptoms, about diseases, about lab results I have a number of times thought, wow that sounds like Abby, only to find they were talking about HIV in the article.
On the drive home we talked about it. Abby said," HIV doesn't scare me at all, cannot be any worse then the stigma of having Mito in your records."
That caught me off guard. But she is right. I have to agree, Mito is the last thing you want on your medical records.
If you have HIV there is a stigma, a horrible one. AIDS patients and HIV patients have been treated horribly by the public and in the past Drs. But, progress is being made. There are many Drs. who are well educated on HIV who are comfortable treating an HIV positive patient.
Our families and friends would not be frightened by that diagnosis. We know that HIV passes in a number of ways. Including medical and dental procedures though rarely.
There are tons of great treatments for HIV. Many many patients live long full lives. They have careers, travel, eat out...
Please don't think I am minimizing HIV, but more trying to point out that having a diagnosis like Mito is as bad as HIV, actually worse in some ways. It is impossible to find Drs. No decent treatments. For many like Abby no quality of life. Too tired for friends. Too tired to read, to talk .. getting sick from being outside the home.. having no idea what tomorrow will bring. Heck, I am still not convinced Abby has Mito, but if this is Mito? I would not wish it on anyone.
Today, patients with HIV and AIDS still face unbearable bias. They suffer a horrid stigma. I know this, but to hear Abby say it would be "easier" to have that then Mito?
I have had well meaning friends ask, "Isn't Mito like fibro or chronic fatigue?" Not meaning to but insinuating that Abby is exaggerating or "milking" her disease, or we spoil her, that it is all in her head..
We have had Drs. who still don't think it is real. They would feel more comfortable treating Abby if she had HIV.
I am still certain that the depletion is secondary, stubborn I guess. We did manage to prove that the suspected FSGS due to Mito is wrong so why not think any of the diagnoses she received here in Houston are wrong? Each appointment I lean more and more toward Mast being the root of all of this,.. but Mast Activation is nearly as disbelieved as Mito is.. however, the prognosis is gobs better. Not curable, but for many, treatable.
Mito is a dramatic disease. Seems like the drama goes well beyond the disease. From patients to Drs, it is endless. I don't have the energy for it, and neither does Abby.
Of course we felt relief in knowing she doesn't have HIV but a burden in knowing that Mito has a rotten stigma and be it secondary or primary it is stuck in her record.
If a Dr. doesn't believe it, it cannot be real- Right?