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Transcript The video for this interview is also available. Syrel's Interview Contents: Segment 1: When and how she first learned she had the disorder. Segment 2: The important relationship she has with her doctor. Segment 3: Syrel talks about having a daughter with the disorder. Segment 4: Being a teacher with the disorder. Segment 5: The progression of her NF1 and her hope for the future. Segment 1: I was not really diagnosed unti I was probably about 23, 24, and I was in the process of getting my Master's degree. I broke out in hives, took myself, pre-HMO days, to a physician who said to me, "I don't care about your hives. Do you know you have no right to have children?" And that was when the bombshell hit that there was something going on. Well, I burst into tears and, um, my husband and I overreacted. Oh, I wouldn't say "overreacted." But we went for genetic counseling and remember, this was a good 25 years ago, and the genetic counselor opened up a book and showed us the most horrific, horrific, um, cases of NF, and said "This is what your children will be like." And I called my gynecologist, asked to be sterilized. Thank goodness he... he knew that I was going through a shock and said "No time, no time." Uh, eventually we went to the National Genetics Foundation who hooked us up with a doctor in New York who was doing research and was able to put things in perspective for us. Um, we knew at that time that there was a 50-50 chance of us passing this on to our child, um, but we knew within that 50-50 that it was a range. It could be insignificant, less than I had NF, or severe. And at that point we decided we would take our chance with one child. Segment 2: My most important physician is my primary care physician and she oversees everything. When I need to see the specialist for NF, neurofibromatosis, she'll set up the appointment, make the communications, and let that doctor know what's going on with me. I also see a dermatologist, mostly for other family issues, but he does remove my neurofibromas as they need to be removed. And a local surgeon who has also done some of the scalp neurofibromas. Segment 3: Lindsay was diagnosed with NF when she was about four months old. Up till then she had had no café-au-lait spots and we thought, "Phew, we won the 50/50 toss here." She's very mildly affected, although a little more severely than myself. She already has neurofibromas, but she's a very dynamic young lady. She thought her NF doctor was especially wonderful because she had some freckling around her chin and she said that was the thing that she hated most when she was about 12 or 13, and he turned around and he said to me, "Mom, haven't you ever heard of the makeup counter in Filene's? Go and get her some makeup." And so she thought that was cool, that the doctor got her into makeup. But I'm there for her to listen. We've really turned over all her health issues to her. She's in her 20s now and when she wants to see someone she goes, sees someone, and as a mom, I have to hold back and even though I'd like to put my two cents in, I leave it in her hands. Segment 4: I think it's very important for parents to be open with their teachers. If a child has neurofibromatosis, and I'm not saying this is a student of mine, but say this child doesn't like to go out on the playground, or this child is staying away from other children, it might give me some insight: is this child being teased for some reason? You know, what's going on here? The other thing with NF, especially, sometimes the kids think they're the only person in the world who has NF, and whoa, now they have a teacher with NF, and that's pretty cool for them. I would want teachers throughout this country and the world to know that NF students have a special place. They're very often made fun of because of their café-au-lait spots and any tumors they might have. And to be on the lookout for teasing and give those kids the support that they need. I've had children in my class who've talked about having NF to their classmates and I think that's very helpful. And then when they have added "And guess what; Mrs. D. has NF, too," as well -- not NF2, the disease -- it helps children understand what's going on. I also want teachers to be aware that parents of NF kids are sometimes in a panic and you have to be there to hold their hand and to understand, and if they want a workup done for learning disabilities, maybe you'll push it a little more for an NF student knowing that, yeah, statistics are that these kids are more likely to have learning disabilities. Segment 5: As a midlife person, my neurofibromatosis seems to be a little more active than it had been. I have a lot more neurofibromas. Some of them are a lot more uncomfortable, but it doesn't worry me a great deal. Very occasionally I still have that panic that every parent has, and I would assume every NF patient has: "Oh, I wonder if it's a neurofibroma." For example, my hips had been bothering me and I said to my husband, "Do you think it's a neurofibroma?" and he said "I don't think so. Just go to the doctor." And, you know, she had to reassure me, "Let's try this first and then we'll look." And of course it was something else completely. So I think the future is very bright. I think they're going to find ways to control the neurofibroma growth with some of the research that's going on in the cancer and tumor fields and I think people are going to have a lot more options than I had.
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