Ariella's Story - Living with familial Mediterranean fever
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- čas přidán 10. 09. 2024
- Ariella shares her experiences in trying to get a diagnosis for her condition. She talks about what it is like living with FMF and how treatable the condition is. Ariella feels strongly that awareness of Jewish genetic disorders like FMF, and the availablity of genetic testing are really important in getting an accurate diagnosis and effective treatment for patients.
I'm just..blown away. I'm so just amazed people can relate with me. People say I'm just wanting attention. But..FMF is horrible. It's so cool seeing how other people are just like me :).
I HAVE IT TOO!!! your story is almost exactly like mine!! The appendix, so many doctors guessing incorrectly, and getting an attack whenever. The struggle is so real!!
its horrible
@@abigailsarafian8747 same if it wasn’t for my ma not giving up i woulda been dead
Well you deserve attention, and if haters don't know the difference between attention and awareness then that's their problem.
I am Hungarian and I have FMF. It started in 2006 for me too. I dont know my origin. I've also removed the appendix. I was also treated with Crohn's disease. In 2016, the disease was discovered by a specialist. Thank God.
I try to find the right lifestyle. and the best treatment. now i am taking colhicin.
I wish lot of happiness for Ariella and you and your family!
Szia, látom magyarországi vagy. 3 éve küzdök ezekkel a tünetekkel, FMF re nem vizsgáltak még. Neked melyik dokinál sikerült ezt kideríteni?
I'm 56. Just diagnosed after years of pain, disability and misdiagnosis. Thank God! Also, helps prove many secrets in my family heritage. Wow.
This story resonates so much with my personal story! I struggled with episodes that reoccurred every 3-4 weeks with temperature of 103 F and profuse sweating, joint aches. It took a total of 13 months to identify that I have the FMF. Another 5 months to finally find a medication that worked for me as I was part of the unfortunate 5% population that does not respond to Colchicine.
I am neither jewish, nor Mediterranean. I was born in south India and both my parents are from there.
thank you for sharing your story!
would you mind telling me what worked for you?
Kineret
Sri Challa thank you! is that anakinra
yes. they are one and the same.
Sri Challa thank you! good luck!
I searched FMF because I did a 23 and Me Ancestry/Health DNA test and it showed that I am a carrier of the FMF gene variant (meaning, if my wife is also a carrier our children could develop FMF), maybe most interesting of all is that it showed that I'm of Ashkenazi Jewish heritage. I had no clue.
Glad to hear that she was able to get a proper diagnoses and is living a happy, healthy life.
Is that ancestry tes very expensive? To have the blood test in Australia is $500
@@nellarcherthepsychicchanne2065 The 23 and Me test was a gift. My mom got them for all of us for Christmas that year. I’m not sure what they cost. But it’s the 23 and Me Ancestry + Health kit if that helps.
Been diagnosed with FMF after 19 years of pain and suffering no one could ever understand. Glad to find you guys
I had maybe 4 years or something until a Cardiologist said that he knows the fmf and it seems like I have it I so glad that we went to him even its not his area he found out what I have. And all the other doctors said that I am okay its just because I am growing. But how should that be possible to be sick for 2 weeks with fever und pain and more i dont understand the doctors
I’m from iran , I have also diagnosed with FMF at the age of 16,my both parents have the carrier gene of FMF and I’m the 3rd child of the family who has FMF. My other two siblings does not have the symptoms but they definitely have the carrier gene .
I’m taking colchicine for 5 years , and had no issue with it .
Which variant did you have? I also have fmf
One copy of the gene, and my symptom is abdominal pain. I am afraid to start taking colchicine.
@@nawidsahargul8599 how are you feeling now? i don’t want to frighten you in any way, but colchicine didn’t work for me, unfortunately. so just wanted to know about your way of treatment for now, if you’re down to share :)
i have been diagnoses at 7 years old and im 16 right now, im also the third and last child of the family and im the only one with symptoms. my parents are also both carriers, honestly it feels so good reading through all of these comments because our disease is so rare nobody understands
I am Armenian and I have FMF my parents are carriers and I have the actual thing, but my sister is clean! She doesn’t have any of the genes!
I got my first attack at age of 5 months, and I drink the medicine since I was 1 and I am glad people in Armenia where it is really common so people right away knew what was wrong with me and I am Christian not Jewish :)
Thank you so much.
I have been sick for many years, doctors don't seem to take it seriously, so I got myself a medical DNA test and I tested positive as a potential carrier of this gene .
I have absolutely no jewish or arab DNA at all, the closest thing to any mediterranean DNA is something like 1% northern Italian, I guess that even the tiniest speck of DNA matters, of all of the genes to make it through the FMF gene was the one to make it.
I'm glad you shared this coz I don't know anyone that have the FMF too
Me neither cause where I come from they say „This is not a disease common here in our country“. (I have it and was diagnosed after a genetic test at 23) In my family no close Jewish relatives are known but I have a suuuuuuper Hebrew surname. My father right now is dying of kidney failure as his father… and I found out after his diagnosis why he is dying.
I am Turkish and I have FMF, it calls Armenian fever also. It affects Arabs too. It's hard to get together for all these nations by the political situation but this disease could do this. God has an interesting sense of humor..
Hüseyin GÜNEY good point, ı'm turkish and ı have F.M.F too.
This tells us so much
Haci sikintili bir sey ya, her icmece yaptigimda karin agrisi oluyor
that is a good line of vision :) Btw I have fmf,too
Sorry to hear that. 😔. My daughter has this too. Im armenian myself
Sometimes bad must happen for something good to come out of it. Stay strong, we are all fighters…
Since I was a little child I went to doctor's everyday, and never went to school because of this symptoms, everyone though I want attention and laughed at me. The doctors found out after 5 years of these symptoms every week, started off with ankle blown to abdominal pain for 4 days, not to mention that I have asthma so they came together. I kept asking my self "why me? why do the doctors don't know what I suffering from..". Most of the doctors just gave me an antibiotic to shut me up. But now ( I'm 17 ), I'm gladly know what do I suffering from and taking 3 pills of colchicine a day, and combining calisthenics and cardio all day long with of course healthy and delicious food! And my asthma and my FMF attacks has been reduced drastically!
Its the same with me I know how it feels all doctors said that its because of puberty and growing but how should that be possible i dont understand it symptoms like fever beeing sock for 2 weeks with pain that feels like knifes how can they always say that its because of growing. Even the hospital akways said it broo whyy. After we found out what it is i changed all my doctors they dont know anything only taking money i have really good doctors now
I am an arab and i got my results back just today and i have it and i went to many doctors to know and everyone was clueless and i almost had my apendix taken out ,i was 2 hours away from having the surgery but luckily I didn’t
I'm glad to see ppl like me from different countries
Nemo ii
I discovered I was a carrier for this through a DNA test. Both my daughter and I have periodic bouts with fever and no other symptoms. I often wonder if this could be playing a role. We’re in the US and have partial Ukrainian Jewish background. I’m glad that the medicine helps and that you’re feeling better!
I have FMF to and this Woman spoke out of my Soul. Suffering from repeatly Pain, going from Special doctor to special doctor and staying in the Hospital and Nobody including yourself dont know what you have is just bullshit. Wishing everyone and anyone a healthy live Peace out guys
I'm Kurdish and just found out that I carry a variant of the gene from my 23&me report - Apparently, it's very common in Middle Eastern people from the Mediterranean regions. I don't have the illness but I'm pretty sure my sister has it. She went through the exact same thing that you did but sadly, wasn't diagnosed because everyone said something different. Thanks for the video!
I am also Kurdish and so is my brother we are both carriers and sufferers on the disease
You are lucky it was once every six months. When I first got them it was almost 3-4 times a month. I lived like this for almost 10 years until I was diagnosed.
It took me 3 years before the doctors figured out I had fmf. I also got it frequently and had to do pretty much a whole semester of college from a hospital room
Michael Isenhour can’t tell you the amount of times I had to take a midterm or final exam in college while in an intense amount of pain. Terrible experience.
I'm happy for you. God bless.
Me too guys I was diagnosed with FMF back in June 2010 after losing my two kidneys and I was prescribed the colchicine 0.6 mg 3× a day
To save the rest of my organs
believe me guys I went through a lot of hard time Before doing kidney transplant on September 11th 2018 I was so blessed and God reward me for my patients
and now I'm doing good and still taking the colchicine two times a day and I'm tolerating it and I'm leaving my best life thank God
Damn it am I going to lose my kidneys in the future
What mutations do you have?
Wolfiewolf, I have a friend who is on Medicaid because CA accepted the expansion. A diagnosis after 14 years. He's responding very well. Good luck.
Hi everyone!
My ethnic background is from Mainland Greece (Peloponnese), Anatolia (Black sea: Pontians), and Balkan (Macedonian).
I have had all of these issues for a long time: severe abdominal pain on left side, refelux, glands getting inflamed and sore (Pharangitis), feverish symptoms, chest pain, occasional joint/muscular pains, skin rashes that come and go, bloating, gas, occasional oral ulcers.
I feel like all of the stories in the comments and much research I have done leads me to believe that it might be FMF. This is because the following all have come back normal:
1. Blool tests - all normal (My whole life)
2. Parasite stool tests - negative (February 2024)
3. Colomoscopy results - all good (A w eek ago)
4. Allergies (Everything came up negative: 2022)
5. Liver function test: Normal (2020 & 2021)
It is very strange + confusing. Seeing my Doctor on Thursday & I might ask for a Gastroenterologist referral.
Is this the right way to go about it? Thanks so much everyone.
I got diagnosed with fmf at 36 this year. I have 2 mutations. I'm on colchicine now at 0.6 a day and my crp level has gone down considerably. It took a year of investigating to find out. I'm Egyptian.
Thank u for the video, very useful for exam prep as well, if we can alleviate the suffering of any person, what can be more precious.
this is my story to. thank you for your post.
Guys I had a 2 1/2 years of non stop FMF attacks. The only medication that worked for me is a monthly injection of Ilaris. I’m also on colchicine to protect my kidneys
Thank you so much for sharing .
Can anybody say Colchicine of which country of manufacture is effective and what other drugs are you using during an attack
I was diagnosed with FMF 20 days ago and I’ve been taking Colchicine since then . The initial dose was 0.372 mg , 18 days later , increased to 0.75 mg ; it’s effect hasn’t kicked in yet and still waiting for the effect of colchicine to take place .
I’ve been in joints pain again since February and having fever attacks with chill almost 3x a week .
I started since February gluten-free diet, however, I notice that also gluten-free carbohydrates ( rice , polenta , potatoes , gluten-free pasta ) when consumed in normal portions I used to eat, will surely trigger more inflammation than I always have , accompanied by fever and chill attacks. I’m almost vegetarian now and I’ve been very careful like crazy with my diet since months .
What experience do you have in respect to foods that trigger the seizures? Please share your FMF diet; I would appreciate it so much . Thank you 🙏🏼
I’ve been diagnosed with FMF last April 2020 and was then prescribed with colchicine; starting concentration of 0.372 mg , then increased to 1 mg and after 5 months increased to 2x 1 mg daily . I haven’t have any fever attack since colchicine therapy but slight wrists and finger pain after having consumed too much carbohydrates or after doing household chores. Too much carbohydrates consumption leads to pain : the amount of rice, potatoes and polenta I used to eat before was 3-4 x too much that I could tolerate which could trigger the pain. I started eating gluten free long before I was diagnosed with FMF as I noticed eating normal bread was a pain trigger.
Now , thank God I’m doing well. I reduced my daily meal to 2 instead of 3 practicing the so called interval fasting . I eat lesser meat ( no pork) and eat plenty of vegetables but avoid too much of sweet fruits because of the fructose.
Beside from colchicine I still take Methotrexate ( 25 mg/ week ) against the Rheuma issues . I’d been in Aprednislone ( cortisone) since Feb 2020 but it will be stopped in a few days.
I hope my friends you’re doing well . ❤️
I'm Kurdish I've been having abdominal pain episodes for 5 years, I've seen many doctors but failed yo get an answer only yesterday when I had another episode a doctor mentioned that I might have FMF disease and I'm now waiting for test results.
I have fmf and after my teenage years the attacks completely stop. Although I still must take cholchine twice a day.
I have fmf also. It took doctors in PA over 3 years to find out what it was. I'm of Italian Roma decent and Colchicine helps me daily but sometimes the pain comes back.
When you feel that you are having an attack, take Movalis
I have FMF also, I take cholchacine, topamax etc. I was sent from doctor to doctor and they could not figure out what it was it would start out as foot pain and migraines and now abdominal pain. they would get so bad I would puke or have to go to the hospital and get a Toradol shot that would be the only thing to take away all the pain. I also have granuloma anulare its a rash I have had it on my foot since I was two they said it was supposed to go away from time but I was and still am self conscious about it so I decided to get the steroid shots and it gave me a really bad infection... it didn’t work. I am a 14 year old female, my mom is American and my dad is Arabic. FMF or any other condition is not a joke. Sorry if I didn’t spell the medicines right
Just diagnosed with this after a week in the hospital.
Sharing your story give me a hope, i have same issue i am from middle east
I m Palestinian I m 48 I have from 1975 diagnosed in Jerusalem taking colchice from that time
Do you take the medicine everyday?
I have F.M.F also, no joke I swear, I am not Jewish, I was born in America, my father is from India and my mother is from America. I originally took colchicine and they didn't make it anymore so I had to take colcrys and now colchicine is back so I can now take it again. But the medicine is still like 300-400 dollars for like 90 pills.
huh, I was confused on that
Adi Chikka Hi Adi! I am Indian too (both parents are Indian), part of the reason why it took an excrutiating 13 months to figure out that I had FMF was the fact that I was Indian. I was told that this is extremely rare in Indians. I am happy for you that Colchicine worked, I belong to that unfortunate 5% population who do not respond to this simple yet effective medication.
Sri Challa Have you heard of the New shot that has came out that you take once a month that is better than colchicine. I think you should try it. I got FMF from my father who had type 42 I believe, My Mother had another type, because she is partially Cherokee and it would have been a lot worse if I got her's
Adi Chikka I heard about it, but that drug is way too expensive. :( Are you managing this disease with Colchicine? I wonder how many more Indians have this mutation. I was told by my doc in Boston that it was very very uncommon for Indians to carry this mutation.
I am doing well with colchicine, I have been recently been under a lot of muscle and hip pains, so my doctor gave me some medicine to help with it, The drug is expensive, but it works very well. It was a shock to me when I learned that I have fmf, and that like you said it is very uncommon for Indians to carry this disease. I am thinking that I will eventually become a doctor, I've been thinking this since I was 10, and I hope that I can find a cure for fmf, or someone does. I have a roomatologist about 1 hour away from where I live, so it is sort of good, but it still is a long drive. I do not personally know anyone (face to face) that has fmf other than me, but I can see many people on youtube, and many other websites. I hope that there will be new medicines, and I hope your condition gets better.
Im American
No known Mediterranean roots
Diagosed late at 40 years old
Too late for the colchicine, my body is unaccepting of nearly all medications at this point.
Started out at 7 months old
Well I’m fully Japanese but I have FMF and I don’t know why
@@Tuamigajaponesa me either, answers are elusive and come too late
Every week or so I get a fever with no side effects starts with the chills then the hot forehead or face then I go to the school nurse they check my temperature and I have a fever and have to leave school early. What do I do?
Wishing you healthy and happy days. Do you think exercises such as fitness, weight lifting aerobics, etc. help to reduce the effects of FMF? Thank you in advance.
I have FMF and HIGM syndrome they refuse to diagnose me despite positive test results. A full hysterectomy. . I don't know how to live.
Thank u for sharing the story
Roy gh
yes , I am taking colchicine french brand and my life is good now ,before colchicine I was like dying ,there is a great difference , are u too a carrier ?
Yes everyone comes here is a carrier
Wanna ask u is the French brand is better than the Egyptian one
fahrenheit Again , I’m a Filipina with Spanish descent. My first periodic fever attacks started in October 2016 and the fever took place every day 2 times a day for 4 weeks long. I was confined in the hospital and the diagnosis was rheumatoid arthritis until 2 days ago I got the result of my genetic mapping and it proved that I have FMF . I started taking 0.374 mg / day Colchicine since 2 days and in 2 weeks I’ll get the double dose . I pray that colchicine would help me🙏🏻
All the Best to all of you here 🙏🏻❤️
@@brendaroxde6471 I wish your life be better . you must take about 2mg a day , god bless you
My son has fmf he takes predisolone as soon as the attack starts , stays on it for 3 to 4 days and then stops taking it.
I had the exact thing happen to me they thought I had appendicitis then it went away then went to a crap ton of specialists.
Daes anyone have this disease with low Fever not High, diahrrea, Tiroiditis, osteoporosis, gluten sensitivity? And thoat pain?
I am, ( without osteoporosis) my presentation is atypical, but that saved me from being operated.
I have it. From turkey
i am Palestinian and have this since i was 6 years old, it sucks.
hi i have been 11 years sick with fmf and my body didnt respond to colochicine and i am not Jewish but i am from the middle east ,lebanon and this sickness is a comment sickness and when i get the attack i just wish death i have been living with it for the last 11 years every one to tow weeks i got this attack,i lost my life ,my dream,every thing just watching my self dying slowly from the strong pain killer i am taking.
king mick any updates with your case? Salemtak
king mick I’m from Lebanon too. My daughter has FMF too and was diagnosed in Lebanon and too colchicine there but it didn’t work when we came to America her doctor who’s from Egypt told her not to take the colchicine from there cause he has many patients from Middle East and the medication doesn’t work even if they take 10 a day. Since she’s using it from America it’s better results.
I was diagnosed with FMF in 2008, after long suffering, but my presentation of the sickness was chest pain, which save me from getting into operations
For the first 4 years colchicine was doing great but then I started to have the attack every 10-20 days, so started on human monoclonal antibody medication ending up to use ILARIS ( canakinumab), which is my last choice of treatment, but the problem now that I hit my medical insurance ceiling, as the single monthly dose cost 20 k USD,
So I stopped it after using it effectively for one year, and went back to colchicine 1 mg daily plus preventing some kind of food ( lemon juice, too much tomato, and grapefruits) drinks a lot of water ( to achieve good dilution - some pain management theory does suggest that) and I am fine with no relapses, went back to (6 months +) episode but started to develop different presentation never happened before as joint swelling ( lower extremities) and tounge swelling with bad stomatitis, and sever headaches, but still under the 6 months period, anyway just felt that sharing my story would help.
king mick , Has your Consulting doctors suggested the biologic therapy a IL-1? It’s more expensive than Colchicine but i hope you have a good health insurance.
Have you also tried to provide the Colchicine from another producer?
As far as I know about 10% of the FMF patients don’t react to Colchicine.
Glad I’m not alone fmf is terrible
Ive been living withFMF since 8 years old now im 22
Thanks for sharing! Did u take colchicine during your pregnancy? Is it safe?
Yes it is safe
I have it too but no end to it
Doesn’t colchicine medication work? If not IL1 antagonist is the 2nd option. Good luck ❤️
My mother suffers from the same disease
This condition, I suspect, may be confused with Lyme disease and other tick-born diseases. I have seen several patients who swore that they had Lyme disease or other tick infections (because it was fashionable and they were convinced that Lyme and other tick infection tests were entirely inaccurate. Sadly, they welcomed incorrect treatment for Lyme disease which is useless, and harmful, for those with FMF.
My 4 year boy turned nomid.we are living in india.anakinra is not available in india.some body please help me.....
I have at least one mutation for this, so I am at least a carrier for this. I knew this for few years But my disease is so much worse than this that I didn't pursue this as a probable cause of my disease. My disease is soooo much worse :/ at least symptoms doesn't cover as well as for some other diseases. Good for her I guess, I wish I had only that
+Mariusz “oneone687” S i'd like to see what she thinks if she had "ATTACKS" every 2-3 days like me.
From what I've heard this is an extremely serious issue in Sephardic Jews, not so much Ashkenazi Jews. All Jews should get screened for it though as they have a high carrier frequency (non-ashkenazi and ashkenazi).
What are everyone's symptoms?
joint pain ,for me.
Where/ how did y’all get tested?
according Symptoms,Because no other disease is fixed
My name is Alex. I am armenian living in Netherlands. .today after 1 year researchs we found that my little girl has fmf ..she is 3 years old ..I don't know what to do ..can't see our angel safering with this pian. .pls help me with any advise ..
Barev dzez. Inch harc unek Alex ? Inchov karogh em dzez ognel? Ete kuzek grek dzer email porcem dzez mi banov ognel, kisvel dzez het
Hey Alex, I’m an Armenian too from Lebanon. I was diagnosed with Fmf in 1995 when I was 4. I take colchicine daily since then and face no issues at all unless I skip colchicine for more than a day. The symptoms and pain reduced a lot with age.
Araz xx I
Araz xx , poor little girl . Good Luck ❤️❤️❤️
I was diagnosed with FMF two days ago . I receive Colchicine for a start 0.374 mg dose per day
I am Egyptian, Christian, and I have the most severe case of FMF possible.
Egyptshun
What do you mean by severe?
Mark Adams every symptom possible (except rashes) and attacks every week.
Egyptshun
Abdominal attacks every week?
Egyptshun
Do pain killers help you?
Egyptshun
How much colchicine do you take?
Colchicine has nasty side effects
Try using Stinging Nettle to reduce your colchicine intake
Hey! Could you please explain more about the side effects
@@danatrad6970 diarrhea, nausea, and some metallic taste but was tolerable.
hello, i also have FMF i found out about it in the army in boot camp my feet got inflated and i was kicked out of combat training.
the army doctor told me about the and i started taking colchicine , also i became lactose intolerance (cause by fmf), at lease in israel the goverment pay for the medicane so its cheap (27 chekels per month - about 8 dolors).
also colchicine hurt men sperm count so i advice male to stop the treatment if trying to conceive.
best of luck and good health
shouldn't i marry a man with thid disease fmf ?
آلاء القصبي do you love him?
Over time you need to increase the Mgs especially when you put on some weight. For example, if you are 60 kg or around 160 pounds, you take one tablet 1 mg of Colchicine. After some years you put on some weight and you become 80 kg or around 180 pounds, then you increase to take a tablet and a half or 1.5 mg a day, then it will work out. Otherwise the attack will come once a month and makes you sit sick at home for two three days.
I weigh like 80 pounds and I take two colchicine or colcrys a day
Adi Chikka Mmmm, interesting !
ok??
Without insurance it's been a nightmare for my girlfriend here in Florida. I wish we could afford genetic testing...
Wolfiewolf
And people say America is the best country in the world)
Someone above u in the comment section did the 23and me Dna test and says it showed his wife is a carrier so maybe this is a cheaper option???
I also have MEFV , can’t live without it , poor and silly medicine can’t do anything with it !
That was my story like, I have FMF.
How could it be a familial disease if you do not have any other patients in your family , I am from Palestine and I have FMF since I was born , my doctor said that when I was 7 and I made the test when I was 18 and it was positive , but I still can not get it , I am studying medicine now and from what I learnt you have to have other patients in your family having the disease this is why it is familial ! But I don't ,, and this is what makes me not sure about it !!
None of my parents have it, and none of their parents neither. I was diagnosed after 12 years of having all the symptoms except the rashes. I was quite unlucky because I'm from the Netherlands where this genetic disorder is even rarer then areas like Israel and Turkey.
This is weird , at least we should have one member in the family with the disease ,,,
, you are taking colchicine right ?
as i know, only nearly 45% of FMF patients, there is another family member with FMF.
But it's familial so there must be another one in the family :(( !
Where did you read that Adham ?
Samantha Ss well as we know, in the "classic way", it's an autosomal recessive disease, so in order to have the disease patients inherit the two faulty genes, each of the parents are carriers and show no symptoms. all this is not new and you read it in nearly all websites discussing FMF. and here come the new prospects:
it's not necessary that all persons with the two faulty genes will develop FMF, so the genes aren't expressed even though they are mutated, so it's possible that for example two related people who both have the two faulty genes but only one of them has FMF.
plus, some people who are accurately diagnosed with FMF have two intact MEFV genes and still they show symptoms of FMF (and these are 30% of all FMF patients)
so what's i'm saying it's not a white-and-black matter, there is some overlap, some say that it is a genetic disease for sure (even thoug not all mutation are completely identified and other chromosomes may be involved?), but it may be or be not familial (could be a sporadic if a mutation happens for example in zygote?)
source: our Professor in medicine school,
and American college of rheumatology
www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Familial_Mediterranean_Fever_%28Juvenile%29/
My mom has that and I'm carrier of it :/
Do you have too??
no, I have the gene but I'm not affected because to be affected, both of my parents must have the gene which only my mom has...