For Kira, for Adrienne, for Dawn, for Mr. Mohan ---for All of Us

[Guest guest]

Dear ---and Mr. Mohan,

Words are such fragile things in the face of what you and your family

are living through now. But please know that we all do understand, and

sympathize with the mountain of problems. Sending you all prayers, but

especially for Kira.

It is so dreadful that some medical people, like the nurse who came to

your house, lose their compassion over time and become quite hardened.

The biggest problem in all of this is the awful ignorance about mito.

Because of this, family members turn away, friends miscontrue events

(like Adrienne's post), doctors put nasty labels on us (esp. if we are

female, I think), and the suffering patients get lost in a medical

swamp.

I really want to press the UMDF to actively fund post-doctoral

fellowships for those young doctors willing to make mito a priority. It

can't be just a page or so they have to read during med school. We need

trained (probably young) new doctors. The researchers we saw go up at

the UMDF convention dinner to receive their checks so that their

projects can go forward are only one facet, and they are a wonderful

facet indeed! Most of their work, however, by its intrinsic nature is

very solitary and too arcane for the average overloaded clinicians.

What we need, and needed yesterday, are competent clinicians who can

handle our needs,and who will actively teach about mito, not just to

other doctors, but to residents, to nurses and to ancillary specialists

like the respiratory,

occupational, PTs and the like.

This will all come, to be sure, because the mitochondria are now being

understood much more clearly. Their relevance is now seen in Parkinson's

and the like. But Kira can't wait the five or ten or twenty years for

this medical knowledge to evolve and to burgeon.

When you are able, I sincerely ask each person here to contact the UMDF

and ask them to fund such post-doctoral fellowships ASAP. We are in dire

need of specialists, especially for the adult-onset mito patients. How

many of you lack a competent, fairly accessible mito doc?

Because of this lack, lives are being lost, being compromised and ,yes,

being stigmatized. The posts for the last week or so have been truly

heartbreaking.

, the financial life of your family has been broken into shards.

Those on kidney dialysis had a law that helped them, and I am glad for

that. But there are so many chronic illnesses that will break a family,

and a workable society has to attempt to solve this. I also speak as a

small business person who has seen many, many people " work " the system

and go on disability that they neither deserved nor needed, especially

on a permanent basis. What we are talking about is not simple, for

there are many liars and cheats out there.

I thank God for the wonderful things the MDA has done, and is doing, but

people don't know about what mito is, even from such a stellar person as

our beloved Mattie. That's where the UMDF must come in.

Please, let's bombard Mr. Mohan with our needs. Thank you from the

bottom of my heart, Mr. Mohan, for what you have already achieved. I

also send you my deepest sympathy for the loss above all losses, that of

your beloved ...

In closing, I must make mention of the legal profession. One of our

other needs is the legal profession. Through the UMDF, people like Dawn

should be able to locate good legal counsel from attorneys who know

about mito. (Mr. Mohan, I believe that the University of Pittsburgh has

a law school. Perhaps legal internships could be arranged at the UMDF

headquarters? ) Ignorance of mitochondrial disease affects marriages,

and divorces. Affects our relationships with government entities, with

insurance companies, with employers (or possible employers). We need to

be testifying before local, state, and federal committees. We have only

just begun the fight.

I send you all the warmest of thoughts, and prayers for your health and

happiness.

Sincerely,

D. Shanley

Pennsylvania