NF FYI

Pope with NF suffererEarlier this week, photographs emerged of Pope Francis cradling a disfigured man in his arms. The powerful images of the Pope’s benevolent touch of blessing spread quickly around the Web. At first the caption accompanying the pictures indicated that the man was disfigured by boils. But many of us knew better as soon as we saw the pictures. More accurate reporting now confirms that the condition suffered by the man before Pope Francis is a form of neurofibromatosis or NF. It is a none too rare genetic disorder that afflicts up to 1 in 3,000 people in the U.S. to one degree or another. (The man pictured obviously has a pretty severe case—the scars of operations on his face are discernible in the photo.) NF is characterized by tumors (fibromas) that, though usually non-cancerous, nevertheless can have serious health impacts. The tumors tend to form along nerves, degrading vision, hearing, and cognitive abilities and causing chronic—and sometimes severe—pain; bones can be significantly weakened and deformed, and the skin blotched and sometimes disfigured. Because this is a genetic disorder, there is no cure, only procedures and protocols to help mitigate the consequences. NF can be fatal, but in the West, life expectancies approach just under seven years of the norm.

My six year-old nephew, who answers to “Bud,” has NF.  So far his symptoms have been fairly mild, meaning that he passes for a normal-looking boy, but he copes with some significant challenges. My brother and sister-in-law—Bud’s parents—have been tireless in their efforts to get him all the help they can, including cognitive and speech therapies every day at school, medication to control seizures, frequent eye exams, other screenings, and etc. Coping with NF will be a life-time thing for their family. They are fortunate to live close to Salt Lake City and the University of Utah medical research centers where some of the most important research on NF is being conducted. (Dr. David Viskochil, for example, was on the team that found the location of the mutation that causes NF in the human genome.) They also have strong family support and the support of their ward. But there are burdens that don’t transfer easily to anyone else. My brother, Jim, writes:

When Bud was diagnosed, Andrea and I were in a depression for about a year. We were terrified by “if.” Parents watch and worry over their kids, whether they’re sick or not. Bud’s NF magnifies all of that, but it has also helped us consider the opportunities and responsibilities of parenthood. NF has motivated us to rummage through everything life has to offer and pick out the things that matter and leave behind a lot of useless crap. We weren’t far off before, but since the stakes are higher, we’re very deliberate.

The thing we worry about most is the social stuff. Disfigurements and social awkwardness affect how people make friends. Friends have a big impact on people’s happiness and the decisions they make. Our decisions sometimes have eternal consequences.

We know that Christ’s atonement and the resurrection will end the physical impacts of NF for Bud. But the spiritual impacts of NF have the potential to last forever. But today, he’s a happy kid with scabby knees, and we’re very glad it’s so.

In the modern medical environment, diseases of this sort raise some significant ethical/moral issues—ones that I had never imagined having to confront, but which are live issues now for members of my own, very Mormon family. For example, married adults who have NF in their gene pool have some serious reproductive choices to consider. Should they attempt to have children at all? Should they resort to selective invetro procedures that would result in the destruction of non-selected embryos, or should they take President Kimball’s famous counsel to “live together naturally and let the children come”?

And what about the management of chronic nerve pain caused by fibromas? Surgery of tumors growing along the nerves can be extremely risky. But the most common pain medications carry significant risks for addiction, all of which can make the use of medical marijuana—something that most of us in Mormondom, I think, find deeply problematic —begin to look more attractive. Medicinal dope is said to have lower addiction rates than, say, OxyContin, and can be grown much less expensively. But it’s still illegal in most places, including Utah. What can be said to suffering people with really no desirable options, for whom ongoing pain is a very real, debilitating thing?

I don’t have easy answers to any of these questions. My default in life is nearly always to defer to policy or protocol when decisions have to be made. I’m a play-it-safe sort of milquetoast, I’ll admit. But what about when the protocol doesn’t feel like it reaches far enough into the territory of suffering to carry us across to a place of resolution? It is easy to consider issues in the abstract and arrive at dispassionate pronouncements as to what should or should not be. But my love for a boy named Bud severely complicates that dispassionate, standoffish posture now. The image of the Pope drawing the sufferer in close is the only way I can imagine the Christ himself responding. He acquainted himself with grief personally, and will not issue judgments from a safe distance. His judgment will be rendered, I believe, not before or after, but during an embrace. There is nothing dispassionate about Christ’s evaluation of our hurts, our needs, or our possibilities. That is my faith.

And there are still no easy answers.

Comments

  1. Great post! Very informative about the condition and about some of the related ethical and moral issues and considerations.

    As to medical marijuana, are you sure that most Mormons would object to that? If prescribed by a doctor, wouldn’t it be considered just like any other prescription med, even by most Mormons? That is what I would have thought.

  2. The Man of Steele says:

    The picture above is causing many internet discussions not about NF, but on why we don’t see this kind of Christlike compassion from leaders of other religions. Seeing the picture I thought this was going to be about compassion and Pope Francis being a more Christlike church leader (of ANY church) than we have seen in the past.
    Love God and love your neighbor. What more can there be?

  3. Great post, great questions.

    A Brother I know in the Seattle area uses medical marijuana for a much less severe medical condition, and both his Bishop and Stake President (whom he consulted first) were completely on board with his treatments. Could it be that the illegality of marijuana has been the basis of most Mormon opposition to its medical use? Make it legal, and perhaps most Mormon resistance will end? (Not ALL resistance, to be sure).

    AB

  4. AB – I’m sure if marijuana was commonly taken in a pill to relieve pain it would be more easily accepted. Even if it were put in vapor form in an inhaler… As it is, it looks like smoking so I think that’s another issue.

    Probably every post needs to end with this line, “And there are still no easy answers.”

  5. If a tree falls in the forest—or, rather, if a minister gives a blessing in a hospital and there is nobody there to record it, can the world still be a better place for it? I believe that leaders of other faiths—certainly of my faith—do reach out and personally minister to others. The presence or nonpresence of a photographer is immaterial to their ministries on the one hand, but on the other, these images are compelling (and a lack of images is, well, less compelling). All of which raises significant questions about our motives for serving, our judgments of others’ actions, the need to educate, and the vocation to exemplify Christlike love in ways that others will want to emulate. I am glad these pictures have provoked those kinds of conversations.

  6. I had seen and was touched by the photos of Pope Francis and this sufferer. The news article I saw online correctly identified the affliction as NF, and the inherent pain and suffering. As you say, this does raise questions that are not easily answered. My wife and I had talked about medical marijuana just last night (in the most academic sense), and didn’t come to any conclusions ourselves. There also appear to be issues regarding how medical marijuana is going to be handled under Washington State’s legalization, and the state has yet to come up with all the answers.

  7. I have a loved one who suffers from a mild disfigurement (not as bad as the chap in the picture, thank God) and I know that about all you can do is hug and pray and cry and love once the medicine ends. Francis seems to get this, which is why I like the man.

    God bless Bud.

  8. The thing we worry about most is the social stuff. Disfigurements and social awkwardness affect how people make friends. Friends have a big impact on people’s happiness and the decisions they make. Our decisions sometimes have eternal consequences.

    Yes.

  9. Just to share a few things. Marinolis a pill, that contains the “active ingredients” of marihuana, but is really only effective for nausea, and doesn’t do that much for pain. There are some inhaler combinations, usually made by alternative medicine professionals, that can be used with a nebulizer, and that contain marijuana as part of the mixture. There are also hookas, ecigarettes that can be adapted for marijuana use, and cooking marijuana into many things, (not only brownies) that help a lot of people.

    I know a number of people, even those in church leadership positions, who have medical marijuana cards issued by the State of Oregon. I know of a few people who have had people be judgmental, but I haven’t heard of any instances of church discipline. When I was on marinol, I told my bishop, and his only response was, “That’s between you and your doctor to decide what is best. Please let me know if there are any ways I can help you.” We then moved to other topics, and never discussed it again. I have heard most members report similar interactions regarding medical marijuana in Oregon.

  10. DQ – Don’t forget pot brownies!

    On a more serious note, great post with a lot of interesting questions to consider. I’ve been thinking about medicinal marijuana lately as a few friends my age (mid-late 20s) have recently shared on facebook that they have different cancers and tumors. If I got cancer and medicinal marijuana were prescribed, would I take it? Honestly, I don’t know. I’ve had Lortab and Vicodin before without even thinking about it. What gives marijuana that stigma? Stoner kids?

  11. I never knew about NF until now. Thank-you! There is a woman who I see from time to time with these tumors. She is always happy and enjoys a large circle of friends. I am sorry to hear that the tumors can be painful. Under a doctors supervision, marijuana should be considered when needed as any other drug.

  12. Thanks for writing this post, Morgan. As Pres. Uchtodrof said about a different topic, “It’s not that simple,” – and your post does a great job of initiating a necessary, non-simplistic discussion.

    I would support anything that is legal and effective to treat my son’s diabetes and my mother’s schizophrenia. In both cases, if it was a matter of life and death (or constant, extreme pain), and if no legal option was available, I might end up supporting something illegal that I considered to be relatively harmless and greatly beneficial. I might not, but it wouldn’t be an easy decision. I can’t think of a reason not to do the same for NF (or any other condition) and medical marijuana – except for a ridiculously distorted interpretation of “the appearance of evil” and an aversion to what is seen as hippie drugs. If it is legal, any hesitancy is gone instantly – and I have to believe the majority of Mormons would agree.

  13. wreddyornot says:

    I live to the west of the Wasatch Mountains. Two things.

    My wife died in April from peritoneal cancer. During her years-long surgeries and treatments there came a time when marinol was prescribed. We were well insured and we had had little problems meeting co-pays on other nausea meds, but when I went to the pharmacy to fill a doctor’s marinol prescription, the co-pay charge for enough to treat my wife after one chemotherapy approached $400. I went home to consult before I put out the money, which I was more than willing to do, but when I explained the source of the problem, my wife said she wouldn’t take it (I concluded it was because of the social stigma involved). So there’s monetary and social costs because of the stigma.

    Second, we adopted a foreign-born infant who came to us in the U.S. at six months old who’s now an adult. The adoption agency had said that the infant was well but we soon learned through a ct-scan that she had just over half a brain — fluid filled almost half of her skull. The practical results included partial paralysis on one side, epilepsy, and diminished mental capacities. Explorations proved that operations wouldn’t remediate the epilepsy and a severe metal allergy prevented her from having a device for electrical shocks to bring her out of seizures. Meds were the only things that worked, partially, to control her seizures. Something like Alepsia might work to all but eliminate her seizures but where we live it’s outlawed. See http://kutv.com/news/features/local/stories/vid_5233.shtml?wap=0.

    Again, my daughter has suffered the social costs of the stigma, not just related to medication and medical treatment but also related to her condition by those of us who live here, a good majority of whom strive to follow the Savior. We fall far short as individuals and as a community showing the love and care that we should. It takes more than an embrace that lasts a moment or two. It takes an embrace that lasts a lifetime and beyond.

  14. Antonio Parr says:

    God bless Bud, Jim and Andrea with healing and strength and the peace of Christ.

    And God bless Pope Francis and his ministry.

  15. The Israelis have engineered a cannabis plant with more of the healing chemicals and less of the THC. I have no problem with that at all.

    http://www.reuters.com/article/2012/07/03/us-israel-marijuana-idUSBRE8620FU20120703

  16. My husband has NF. I wrote about how we handled the ethical issues related to reproduction here (page 22) http://www.exponentii.org/wp-content/uploads/2011/12/winter-2011-corrected-12-13-01.pdf

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