@@gularnasirova5771 I am sorry to hear this. Don’t be concerned. The good thing is that with the medication and taking it regularly, he can live a normal life.
I am in Perth Western Australia my son has fmf his fevers started at 6 months old, long story short it was not until he was 15 he was diagnosed with fmf. He is now 21 and is having a bad turn he is put on predisolone to help stop the flare up. My father is Austrian, my husband is Australian born several generations so I assume I must carry this gene. Other than the nasty flare ups and mild symptoms of joint pain headaches etc he lives mostly a full and happy life , thank you for sharing your story. As a mother you can feel very alone as this disease it’s rare and no one really knows what it is, getting the diagnos finally gave us an understanding of what Matthew has been fighting for so long and we now had a plan of action. God bless you all.
We are glad to hear that your son was finally diagnosed, even if a bit late. We would like to invite you to join our help groups on Facebook. Please send us an email and we will send you the links. info@fmfandaid.org Lots of blessings for you and for your son. My name is Malena Vetterli
@@FMFandAID Hi Malena, my apologies just seen your message, Matthew had to have an operation on his nose , deviated septum and turbinates trimmed, probably too many knocks playing football , sadly the fmf flared up less than 48 hrs after the op , fevers were insane , they doubled to 50mg of Predisolone twice a day , after 2 to 3 days they stopped , less than 24 hrs later his nose which had padding in it and special dissolvable plugs that were to last 2 weeks, well his nose early one morning started bleeding profusely, we could not stop it , called specialist raced him back & the specialist literally rammed this metal rid with padding up his nose, my gosh he nearly passed out , it stemmed the bleeding this was early Friday morning, by Sunday we had him at the hospital getting it cauterised by another E & T specialist, apparently the fevers brought on by the fmf release a protein that causes anticoagulation , shocked me and we were completely unprepared, the op didn’t work so we need to see a different specialist & have be better prepared. I don’t have an active fb but please feel free to post so others are aware of this can happen. Thank you for your reply x
I have FMF a mutation in my MEFV and I suffer from attack at least once every two months I am now 19 and the episodes have caused me great pain and have caused me to miss opportunities
@@Laylownam Hi Nammo I am so sorry to hear that you too have fmf. When my son was 16 he lost his first apprenticeship due to fmf as he was having flare ups every 6 weeks like clock work and his employer let him go. Totally understand how frustrating and impactful this disease can have on your life. 😢Matty has fortunately had periods where he has had no flare ups & or minor ones we have been able to suppress using predisolone. I hope & pray you have support, family & a good Dr to help you through this & stabilise the flare ups & catch them early so you can lead as normal life as possible.
In my dad‘s family most of them had kidney problems and mostly died from it, rarely other diseases. We have some Jewish heritage far far back. My dad right now is suffering from kidney disease and I from when I was little had very strong fever attacks that my doctors deemed as the flu + I also sometimes have way too much Proteine in my urine (like 10 times too high) and then sometimes it is normal. After 10+ years I at one point made a DNA test that included a health test which showed I am „only“ a carrier of FMF (they do not test for all variants) but I am still showing symptoms. It is really sad to know that this is what my dad is most likely dying from but we are all happy I found out to be someone to get meds for it and to look out for when it might be getting worse. I am glad to know so my future children will not be without a mom when they are just reaching their 20s, like me. I might be able to expand my lifetime due to knowing as where I and my family is from it is considered to be a genetic disorder that is from „somewhere else“ and not our country. Cheers to you for spreading awareness.
FMF is a treatable disease. If the disease is active, it must be treated. FMF patients don't have to die from amyloidosis anymore like in the past. Please get diagnosed and treated. We can help you find a specialist, regardless of where you live. For more info, please contact us at info@fmfandaid.org.
Started at 7 months old. 40 years old and just diagnosed. Too late for the colchicine. My body reacts to nearly all medicines at this point, and quite badly reacted to the colchicine. Recent bloodwork showed im likely entering amyloidosis, doing another test today to check on the monoclonal proteins. Ive had 24 surgeries and have one on hold. I live in rural PA and do not have any Mediterranean heritage that I can see. It my research it said it's exceedinly rare for a non-medittrranean to get FMF. No wonder it stumped doctors for 40 years.
I also have FMF , I’m from iran but living in Australia. when I was a child i had episodes of joins inflammation and joint pain. But since I turned 13 , the symptoms has been changed and I was getting very bad abdominal pain . In age of 16 I was diagnosed with FMF and talking colchicine since then and now I am 25 years old. Since I started taking colchicine I has no attacks and I finally started to have a normal life. however I am very scared of side effects of talking colchicine for life time . I heard it has a really bad effect on kidneys and it might cause kidney failure. But not sure
It is normal for the symptoms to change over time. You have no attacks because colchicine is working well. Colchicine actually protects your organs, in particular your kidneys. Please join our Australian help group: facebook.com/groups/FMF.Australia. You can join also our large FMF group: facebook.com/groups/FMFsupport
I have fmf and Egyptian. I have 2 mutations. Went through hell but now on colchicine and doing much better. Only 1 attack per month now. In the beginning it was mostly joint pain and myalgia and fever and now it's mostly abdominal only. Still painful but not as often thank God. It took years to figure it out.
Hi Sarah, one flare per month is still a lot. Please read the attached EULAR recommendations for the management of FMF, in particular item 5. It says: "The persistence of attacks or subclinical inflammation represents an indication to increase colchicine dose" (ard.bmj.com/content/75/4/644). Please share this article with your doctor.
@@benjaminbreeg1323 Gen testimde 2 heterozigot var fakat pfapa teşhisi koyuldu bana. Boğaz ağrısı,20 günde bir ateş,halsizlik. Karın ağrım hiç yok neredeyse ve kortizon alınca atak duruyor.
Ghazal, colchicine is safe. Please read item 5 of this article: "The persistence of attacks or subclinical inflammation represents an indication to increase colchicine dose." ard.bmj.com/content/75/4/644
@@robertbaker50 MEFV is actually stands for Mediterranean Fever. The one that you had mentioned is one of the mutations. Its other aliases are FMF, MEF etc. It is a recessive gene with unknown significance. Therefore, you are at least a carrier.
Chron’s disease is an autoimmune disease whereas FMF is a disease or syndrome due to mutations in MEFE gene in the chromosome 16. This gene is suppose to be responsible for fighting inflammation in the body , but because of the mutation that gene is not able to guard the body against inflammation attacks . It takes time to get clearly diagnosed as the symptoms are tricky. They resemble to Rheumatoid Arthritis or Lupus however the serological and Antibody test show negative which should indicate or correlate to to the two diseases. I am 64 yrs old. I have the symptoms of rashes and fever since I was 25 but it started to get worse at 55 , and worst at 60 . Only in March 2020 , after many hospital confinements ,I was finally diagnosed with FMF. I’m a Filipino by birth but I have Spanish ancestors . I can recall the symptoms my grandfather likewise my father . They have recurrent attacks of fever and joint pain , so they felt chilly most of the time despite the tropical temperatures . Now it’s crystal clear to me what they had been suffering from. I am on medication of 2x 1mg of Colchicine daily, and 25 mg Methotrexate weekly against Rheuma which FMF has triggered . Thanks God since April 2020 when I started taking colchicine ; no more periodic fever, ( which lasted as long as 6 weeks ) rashes and severe joint inflammation. But I need to pay attention to my diet such as : gluten free as good as possible, less carbohydrates, less meat rather vegetables and less household chores . Good luck to all my FMF colleagues . There’s always hope 🙏🏻
![[#2024MAMA] G-DRAGON - 무제(Untitled, 2014)+POWER+HOME SWEET HOME+뱅뱅뱅+FANTASTIC BABY | Mnet 241123 방송](http://i.ytimg.com/vi/Ox29z5Nf1Uk/mqdefault.jpg)
Who sick in FMF here? 🙋🏻♀️
It took me almost 10 years to diagnose this disease. I went through hell my teenage years.
Me too damn first time it happened to me when I was 2 and still happening till now but I am taking medicine for it I am 13 btw and I feel you
My son just has been diagnosed fmf. I am really concerned about this
@@gularnasirova5771 I am sorry to hear this. Don’t be concerned. The good thing is that with the medication and taking it regularly, he can live a normal life.
lived with for years , pain and agony. Hospital visits...Finally at age 40 it was diagnosed. On colchicine now and problem gone! Life is back ! 😁
I am in Perth Western Australia my son has fmf his fevers started at 6 months old, long story short it was not until he was 15 he was diagnosed with fmf. He is now 21 and is having a bad turn he is put on predisolone to help stop the flare up. My father is Austrian, my husband is Australian born several generations so I assume I must carry this gene. Other than the nasty flare ups and mild symptoms of joint pain headaches etc he lives mostly a full and happy life , thank you for sharing your story. As a mother you can feel very alone as this disease it’s rare and no one really knows what it is, getting the diagnos finally gave us an understanding of what Matthew has been fighting for so long and we now had a plan of action. God bless you all.
We are glad to hear that your son was finally diagnosed, even if a bit late. We would like to invite you to join our help groups on Facebook. Please send us an email and we will send you the links. info@fmfandaid.org Lots of blessings for you and for your son. My name is Malena Vetterli
@@FMFandAID Hi Malena, my apologies just seen your message, Matthew had to have an operation on his nose , deviated septum and turbinates trimmed, probably too many knocks playing football , sadly the fmf flared up less than 48 hrs after the op , fevers were insane , they doubled to 50mg of Predisolone twice a day , after 2 to 3 days they stopped , less than 24 hrs later his nose which had padding in it and special dissolvable plugs that were to last 2 weeks, well his nose early one morning started bleeding profusely, we could not stop it , called specialist raced him back & the specialist literally rammed this metal rid with padding up his nose, my gosh he nearly passed out , it stemmed the bleeding this was early Friday morning, by Sunday we had him at the hospital getting it cauterised by another E & T specialist, apparently the fevers brought on by the fmf release a protein that causes anticoagulation , shocked me and we were completely unprepared, the op didn’t work so we need to see a different specialist & have be better prepared. I don’t have an active fb but please feel free to post so others are aware of this can happen. Thank you for your reply x
I will email you .. God Bless xo
I have FMF a mutation in my MEFV and I suffer from attack at least once every two months I am now 19 and the episodes have caused me great pain and have caused me to miss opportunities
@@Laylownam Hi Nammo I am so sorry to hear that you too have fmf.
When my son was 16 he lost his first apprenticeship due to fmf as he was having flare ups every 6 weeks like clock work and his employer let him go. Totally understand how frustrating and impactful this disease can have on your life. 😢Matty has fortunately had periods where he has had no flare ups & or minor ones we have been able to suppress using predisolone.
I hope & pray you have support, family & a good Dr to help you through this & stabilise the flare ups & catch them early so you can lead as normal life as possible.
In my dad‘s family most of them had kidney problems and mostly died from it, rarely other diseases. We have some Jewish heritage far far back. My dad right now is suffering from kidney disease and I from when I was little had very strong fever attacks that my doctors deemed as the flu + I also sometimes have way too much Proteine in my urine (like 10 times too high) and then sometimes it is normal. After 10+ years I at one point made a DNA test that included a health test which showed I am „only“ a carrier of FMF (they do not test for all variants) but I am still showing symptoms. It is really sad to know that this is what my dad is most likely dying from but we are all happy I found out to be someone to get meds for it and to look out for when it might be getting worse.
I am glad to know so my future children will not be without a mom when they are just reaching their 20s, like me. I might be able to expand my lifetime due to knowing as where I and my family is from it is considered to be a genetic disorder that is from „somewhere else“ and not our country. Cheers to you for spreading awareness.
FMF is a treatable disease. If the disease is active, it must be treated. FMF patients don't have to die from amyloidosis anymore like in the past. Please get diagnosed and treated. We can help you find a specialist, regardless of where you live. For more info, please contact us at info@fmfandaid.org.
This is literally my story word for word
Started at 7 months old. 40 years old and just diagnosed.
Too late for the colchicine. My body reacts to nearly all medicines at this point, and quite badly reacted to the colchicine.
Recent bloodwork showed im likely entering amyloidosis, doing another test today to check on the monoclonal proteins.
Ive had 24 surgeries and have one on hold.
I live in rural PA and do not have any Mediterranean heritage that I can see.
It my research it said it's exceedinly rare for a non-medittrranean to get FMF. No wonder it stumped doctors for 40 years.
All the best!!! My son has got FMF
Me too and my dad✨😂😭
I also have FMF , I’m from iran but living in Australia. when I was a child i had episodes of joins inflammation and joint pain. But since I turned 13 , the symptoms has been changed and I was getting very bad abdominal pain . In age of 16 I was diagnosed with FMF and talking colchicine since then and now I am 25 years old. Since I started taking colchicine I has no attacks and I finally started to have a normal life. however I am very scared of side effects of talking colchicine for life time . I heard it has a really bad effect on kidneys and it might cause kidney failure. But not sure
It is normal for the symptoms to change over time. You have no attacks because colchicine is working well. Colchicine actually protects your organs, in particular your kidneys. Please join our Australian help group: facebook.com/groups/FMF.Australia. You can join also our large FMF group: facebook.com/groups/FMFsupport
@@FMFandAID
Which producer country's Colchicine is better ?
I have fmf and Egyptian. I have 2 mutations. Went through hell but now on colchicine and doing much better. Only 1 attack per month now. In the beginning it was mostly joint pain and myalgia and fever and now it's mostly abdominal only. Still painful but not as often thank God. It took years to figure it out.
Hi Sarah, one flare per month is still a lot. Please read the attached EULAR recommendations for the management of FMF, in particular item 5. It says: "The persistence of attacks or subclinical inflammation represents an indication to increase colchicine dose" (ard.bmj.com/content/75/4/644). Please share this article with your doctor.
I am fmf too. From turkey
Tanın ne zaman konuldu?
@@melissalman3312 neden sordun
@@benjaminbreeg1323 Ben de aynısına sahibim sanırım da ondan
@@melissalman3312 sanırımla falan olmaz ki o dra gittin mi
@@benjaminbreeg1323 Gen testimde 2 heterozigot var fakat pfapa teşhisi koyuldu bana. Boğaz ağrısı,20 günde bir ateş,halsizlik. Karın ağrım hiç yok neredeyse ve kortizon alınca atak duruyor.
I have FMF
Me too lol
Has anyone or know anyone that took colchicine during pregnancy? and is it safe to get pregnant for patients who have FML?
Ghazal, colchicine is safe. Please read item 5 of this article: "The persistence of attacks or subclinical inflammation represents an indication to increase colchicine dose." ard.bmj.com/content/75/4/644
I'm 40 and only found out that I have FMF gene, E148Q when I did a DNA test in October. If is a rare genetic disease from where I come from.
I did the 23 and me and found out I have the FMF gene as well
@@robertbaker50 Same mutation?
@@baimalli5262 says MEFV Gene, not FMF but it is K695R
@@robertbaker50 MEFV is actually stands for Mediterranean Fever. The one that you had mentioned is one of the mutations. Its other aliases are FMF, MEF etc. It is a recessive gene with unknown significance. Therefore, you are at least a carrier.
And me as well
FMF or Crohns Disease? Humm...
Familial Mediterranean Fever is a rare genetic disease. Crohn's disease is a different condition.
@@FMFandAID but they are so closely resemble each other
Chron’s disease is an autoimmune disease whereas FMF is a disease or syndrome due to mutations in MEFE gene in the chromosome 16. This gene is suppose to be responsible for fighting inflammation in the body , but because of the mutation that gene is not able to guard the body against inflammation attacks . It takes time to get clearly diagnosed as the symptoms are tricky. They resemble to Rheumatoid Arthritis or Lupus however the serological and Antibody test show negative which should indicate or correlate to to the two diseases.
I am 64 yrs old. I have the symptoms of rashes and fever since I was 25 but it started to get worse at 55 , and worst at 60 . Only in March 2020 , after many hospital confinements ,I was finally diagnosed with FMF. I’m a Filipino by birth but I have Spanish ancestors . I can recall the symptoms my grandfather likewise my father . They have recurrent attacks of fever and joint pain , so they felt chilly most of the time despite the tropical temperatures . Now it’s crystal clear to me what they had been suffering from.
I am on medication of 2x 1mg of Colchicine daily, and 25 mg Methotrexate weekly against Rheuma which FMF has triggered . Thanks God since April 2020 when I started taking colchicine ; no more periodic fever, ( which lasted as long as 6 weeks ) rashes and severe joint inflammation. But I need to pay attention to my diet such as : gluten free as good as possible, less carbohydrates, less meat rather vegetables and less household chores .
Good luck to all my FMF colleagues . There’s always hope 🙏🏻