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dietf's Discussions

Corticosteroids may be linked to heart disease

Started Jul 6 0 Replies

Anyone have an idea of this article? It seems that to start using corticosteroid at the age of 5 may be linked to heart diseases. My son began to use corticosteroids at 5 :(…Continue

PRO051

Started this discussion. Last reply by dietf Aug 28, 2012. 3 Replies

Is anybody aware of the change in the "Estimated Completion Date" of prosensa clinical trial?The comletion date was August 2012, but they changed it to July 2013 in 27.07.2012.…Continue

 

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dietf posted a discussion

Corticosteroids may be linked to heart disease

Anyone have an idea of this article? It seems that to start using corticosteroid at the age of 5 may be linked to heart diseases. My son began to use corticosteroids at 5 :(https://musculardystrophynews.com/2017/06/28/earlier-start-corticosteroids-in-duchenne-muscular-dystrophy-linked-to-earlier-onset-heart-disease/See More
Jul 6
dietf commented on PPMD's group Duplications
"A re-comment after two years. My sons are 8.5 and 6. Now our elder boy has problems with his legs. He has gower's sign. We have duplication on exon 39 and still don't have muscle biopsy. Does anyone have knowledge about utrophin drug smt…"
Mar 7, 2016
dietf commented on Roxanne's group Outliers - Intermediate between Duchenne & Becker MD
"Hi all, I have two sons aged 5 and 7. They were diagnosed DMD when elder one was 4. They both have duplication according to DNA sequence analysis. We are seeing a doctor for 3 years and using steroids for our elder son(5 mg per day). But this year…"
Apr 2, 2015
dietf joined Roxanne's group
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Outliers - Intermediate between Duchenne & Becker MD

The reading frame rule holds true 90% of the time. There remains those 10% that does not fit dmd/bmd phenotype. There is a 3rd form that may be considered as an intermediate between Duchenne and Becker MD(mild DMD or severe BMD.See More
Apr 2, 2015
dietf commented on PPMD's group Duplications
"I have two son with dublication on exon 39. We didnot have muscle biopsy. We have dna analysis. One is 7 and the other is 4,5. There is no signs yet. We are using steroids for the elder."
Nov 15, 2014
dietf replied to Char Burke's discussion Calling all duplications - and checking in on status of where our guys are at in the group Duplications
"Hi, I have two sons. Both has the same kind of duplications. 1) homozygous mutation in exon 39 2) Both has no problem, can walk, run(not like other boys but still can run). 3) We are using deltacortil steroid. 5 mg for a day. We don't use any…"
Oct 30, 2014
dietf replied to Char Burke's discussion How are your son doing with duplication(S)? in the group Duplications
"I have two son. One is 5 and 1/2, the other is 2 and 1/2. Both have the same duplication in exon 39 which leads to DMD. Both of them are fine for know. The elder one complains about ladders, can't run fast like other boys can. We are having…"
Dec 17, 2012
dietf replied to Sif Hauksdóttir's discussion Enlarged calv muscles? in the group Early Years (diagnois-age 6)
"Hi, I also have two boys diagnosised DMD. Elder one is 5, the other is 2.5. How do you understand the enlargement in the calvs? Our doctor said us that there is some change in the leg, but it is not in the enlargement phase for our elder boy. Thanks."
Sep 15, 2012
dietf replied to dietf's discussion PRO051
"Thank you all for the information."
Aug 28, 2012
Jason Darienzo replied to dietf's discussion PRO051
"I think you maybe confusing, Pro 51 phase III study "Estimated Completion Date" July 2013 with Pro 44 phase I/IIA study "Estimated Completion Date" of August 2012"
Aug 23, 2012
Andrea Cleary replied to dietf's discussion PRO051
"Dietf, They just finished recruiting this August 2012, and now those latest boys have one year of drug injections before their results will be ready. The link below states "end of…"
Aug 23, 2012
dietf posted a discussion

PRO051

Is anybody aware of the change in the "Estimated Completion Date" of prosensa clinical trial?The comletion date was August 2012, but they changed it to July 2013 in 27.07.2012.http://www.clinicaltrials.gov/ct2/show/NCT01254019?term=GSK+and+Duchenne&rank=2Why did they changed the date?Thanks.See More
Aug 23, 2012
Katherine Blake left a comment for dietf
"hi- please email me (if you want!!!) at blakek@aafes.com.  My husband is Turkish and we want to meet up with anyone who is living and coping with this disease there!!  Our son has a duplication at 49-56.  We spend a fair amount…"
Jul 18, 2012
dietf commented on PPMD's group Duplications
"Hi all, I have two sons. 5 and 2 years old. Both of them has DMD. We have a very small duplication in exon 39. We have elevated CK levels(around 20K). We have no problems for now, but my elder son complains about the ladders. Both can walk, jump,…"
Jul 18, 2012
dietf joined PPMD's group
Jun 6, 2012
dietf joined PPMD's group
May 28, 2012

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Sea & Wind
Age(s) of child(ren)/individual(s) with Duchenne:
0-3, 4-6
City:
Istanbul

Hi all,

I have two son and both of them have DMD.

One is 4.5 and the other is 2 years old. We have no issues right now. But we have elevated CK values(40.000)

We had a gene test on my elder son and the result is point mutation on exon 39. Details are c.5586+87dupTC(IVS39nt+87insTC)

We cannot find anyone with the same mutation and hoping to find one.

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At 8:12am on July 18, 2012, Katherine Blake said…

hi- please email me (if you want!!!) at blakek@aafes.com.  My husband is Turkish and we want to meet up with anyone who is living and coping with this disease there!!  Our son has a duplication at 49-56.  We spend a fair amount of time in Turkey and would love to talk with you.  It's very lonely to deal with this, and it's very difficult for my husband since most of our doctors are either here in Germany or in the US. 

Please drop us a line - our boys are so important to all of us!

Katherine Blake (Aman)

At 2:18am on May 28, 2012, mehmet tarık dündar said…

Merhabalar Barış Bey,

Benim de 2.5 yaşında oğlumda DMD çıktı.

Allah yardımcımız olsun..

 
 
 

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