Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Hi all: My daughter Kelsey (15) has psoriatic spondylitis since she was 8. It has been suggested by her PR in Boston that she could have Marfan Syndrome. She will need to have some heart tests. Symptoms of this disease include loose, elastic skin, long fingers and toes, and MVP. Has anyone ever heard of Marfan Syndrome? Has anyone ever heard of the two diseases being connected? Connie --------------------------------- What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Thanks Patty. I'll post whatever information I get about Kelsey. ThreeMayEmeralds@... wrote: Hi Connie: I have heard of Marfan Syndrome. They looked at it as a possibility with me when I was diagnosed with a heart murmur and then MVP. I don't have Marfan's, but heart issues. Mr. Nick is going through some testing now and Marfan's is one dx that they are looking into. I know Helen (Mr. Nick's Mom) has done a lot of research on the subject. I bet Helen will send out an email when she checks in. Please keep us updated on Kelsey. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Hi Connie- I don't know about Psoriatic being connected to Marfan's but with Rheumatic diseases, one never really knows I suppose. I have a good friend with Marfan's and his siblings all have it as it is highly genetic. They are all super tall which is a hallmark in most cases as well as the fingers, toes, etc. He had heart problems as do all of his siblings with the disease. I know there is a Marfans foundation that has a lot of information on the disease as well which my friend is also involved with. Hopefylly, your child daughter doesnt have it. It is a Rheumatic disease so the arthritis she already has could be part of Marfans if so or could be seperate. I don't know how much this email helps but that is the information that I have. If she does have it, I'm sure that my friends mom or other members will be willing to talk to you if you are interested. Issadora On 2/13/06, Connie White <jasperkelseyrose@...> wrote: > > Hi all: My daughter Kelsey (15) has psoriatic spondylitis since she was > 8. It has been suggested by her PR in Boston that she could have Marfan > Syndrome. She will need to have some heart tests. Symptoms of this disease > include loose, elastic skin, long fingers and toes, and MVP. Has anyone > ever heard of Marfan Syndrome? Has anyone ever heard of the two diseases > being connected? > > > > Connie > > > --------------------------------- > > What are the most popular cars? Find out at Autos > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 HI Connie, Theres a lot of good info on marfans at www.marfan.org. Also check out info on Elhers Danlos symdrome, has this one been mentioned to you too??? My kids are in the midde of testing for marfans. My 8 yr old, has systemic onset JRA, he was dx in 2003. Last fall his rheumy sent us to see a genectist as she felt he has more going on than " just " his JRA. The genectist felt that he has some kind of connective tissue disorder and sent Nick for a echo as a lot of CTD's can affect the heart. Nicks echo showed he has a dilated aortic root which is assiociated with marfans and Ehlers danlos. In further talks with the genectist about marfans and about my other children it was decided that my other children should all have echos to make sure they dont also have a dilated root. My 14 yr old his showing a lot of the symptoms for marfans, very tall ( at 14 hes taller than my 16 yr old, me and my hubby) his feet are larger, he has very long toes and fingers, his face is skinny and long, he has flat feet, is nearsighted and has a pectus carinum (sp) all symptoms of Marfans, but all things that you usually would not worry about until you start to put all the pieces together and in view of Nicks heart issue, would be silly to ignore. You can get into molecular testing to confirm the gene defect (mutation) in the gene that determines the structure of fibrillin, a protein that is an important part of connective tissue. This is the mutation that causes marfans. Although this is very expensive and im not sure insurances cover this. The Diagnostic Criteria for marfans is pretty strict, you can read a list of what the criteria are on the website i gave you above. You can also be dx with whats called emerging marfans syndrome which means that you dont have all the needed dx criteria, but that some of the others might appear later on. I am very interested if you find any info on related JRA and marfans, or any other connective tissue disorders. ive not come across anything concrete in my searches, although i see mentioned a lot of overlaying things, all to do with autoimmune issues. Keep in touch and let us know what you find out... hugs Helen and (8,systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) ----Original Message Follows---- From: Connie White <jasperkelseyrose@...> Reply- Subject: JRA- Marfan Syndrome Date: Mon, 13 Feb 2006 05:48:50 -0800 (PST) Hi all: My daughter Kelsey (15) has psoriatic spondylitis since she was 8. It has been suggested by her PR in Boston that she could have Marfan Syndrome. She will need to have some heart tests. Symptoms of this disease include loose, elastic skin, long fingers and toes, and MVP. Has anyone ever heard of Marfan Syndrome? Has anyone ever heard of the two diseases being connected? Connie --------------------------------- What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Hi Helen: Thank you so much for your response. I am sometimes afraid to look up information about these diseases, but you have given me courage and I will check out the web site you mentioned. Kelsey's rheumatologist suggested she see a geneticist, but he said there is no hurry and she can do it around her next visit with him which will be in December. Her arthritis is in remission right now. She has hypermobility syndrome which is quite painful (as her joints can hyperextend and even dislocate) and the disease sort of counteracts her arthritis when it is flaring except in her back because of the spondylitis. So, she has a lot going on already. He told us she would probably outgrow the hypermobility syndrome when she stopped growing. He said she'd stop growing within two years of getting her period which she started at 11, but she is still growing, only more slowly now and she still has hypermobile joints. She is 5'10 " which is tall for a girl, but I am 5'11 " , so it is not so unusual for her to be that tall. She did have her heart checked via echo a few years ago and they said the MVP she has is not a problem for her, but maybe it will be later on? You did mention emerging Marfans and perhaps that is what the rheumatologist is thinking she has. I'll check out the web sites. Good luck to you and yours and thanks again for all the information. Connie Helen Burger <hburger64@...> wrote: HI Connie, Theres a lot of good info on marfans at www.marfan.org. Also check out info on Elhers Danlos symdrome, has this one been mentioned to you too??? My kids are in the midde of testing for marfans. My 8 yr old, has systemic onset JRA, he was dx in 2003. Last fall his rheumy sent us to see a genectist as she felt he has more going on than " just " his JRA. The genectist felt that he has some kind of connective tissue disorder and sent Nick for a echo as a lot of CTD's can affect the heart. Nicks echo showed he has a dilated aortic root which is assiociated with marfans and Ehlers danlos. In further talks with the genectist about marfans and about my other children it was decided that my other children should all have echos to make sure they dont also have a dilated root. My 14 yr old his showing a lot of the symptoms for marfans, very tall ( at 14 hes taller than my 16 yr old, me and my hubby) his feet are larger, he has very long toes and fingers, his face is skinny and long, he has flat feet, is nearsighted and has a pectus carinum (sp) all symptoms of Marfans, but all things that you usually would not worry about until you start to put all the pieces together and in view of Nicks heart issue, would be silly to ignore. You can get into molecular testing to confirm the gene defect (mutation) in the gene that determines the structure of fibrillin, a protein that is an important part of connective tissue. This is the mutation that causes marfans. Although this is very expensive and im not sure insurances cover this. The Diagnostic Criteria for marfans is pretty strict, you can read a list of what the criteria are on the website i gave you above. You can also be dx with whats called emerging marfans syndrome which means that you dont have all the needed dx criteria, but that some of the others might appear later on. I am very interested if you find any info on related JRA and marfans, or any other connective tissue disorders. ive not come across anything concrete in my searches, although i see mentioned a lot of overlaying things, all to do with autoimmune issues. Keep in touch and let us know what you find out... hugs Helen and (8,systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) ----Original Message Follows---- From: Connie White <jasperkelseyrose@...> Reply- Subject: JRA- Marfan Syndrome Date: Mon, 13 Feb 2006 05:48:50 -0800 (PST) Hi all: My daughter Kelsey (15) has psoriatic spondylitis since she was 8. It has been suggested by her PR in Boston that she could have Marfan Syndrome. She will need to have some heart tests. Symptoms of this disease include loose, elastic skin, long fingers and toes, and MVP. Has anyone ever heard of Marfan Syndrome? Has anyone ever heard of the two diseases being connected? Connie --------------------------------- What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
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