General Question

essieness's avatar

Does anyone else around here have a rare or chronic disease?

Asked by essieness (7693points) June 5th, 2009

I have Addison’s disease (primary adrenal insufficiency) and was diagnosed in July 2008. It’s pretty rare; only 1:100,000 people have it, JFK being one of those people. It’s fairly easy to manage, but is chronic and can be life threatening if I don’t take good care of myself or if I get really ill. I have to take 2 tiny steroids every day for the rest of my life. Luckily, my meds are inexpensive, even without insurance.

I’m interested to know if anyone else has a rare or chronic illness and how it affects your life.

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61 Answers

bea2345's avatar

Mine is chronic but far from rare: Type II diabetes. Diet & exercise only, so far.

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chelseababyy's avatar

I have CRPS, usually only people who are in their 40’s get it. But I got it when I was 16.

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_bob's avatar

I am color blind.

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essieness's avatar

@hiiiiiiii Don’t be a dumbass. It was completely unrelated to the question. Go away.

You too, @Ummmm.

RedPowerLady's avatar

I have endometriosis. It is supposed to be very painful luckily mine hasn’t progressed there yet. I am hoping to get the surgery to correct it (doesn’t stop the condition but does help) before I do experience that side of the “disease”. But that’ll be a few years from now as it is a bit expensive. It affects my life because I need a surgery related to this disorder (not the same surgery I mentioned previously) but because of our medical system I cannot get the surgery right now. I need it to be able to TTC without complications. It’s all quite stressful and financially burdening. And anxiety provoking.

I have friends and family members with rare/chronic disorders as well. My mother has MS. My son had Fetal Bladder Outlet Obstruction. My BIL has no kidneys right now. A good friend of mine has a rare disorder I can’t even pronounce or remember how to type.

It’s all a bit scary.

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shilolo's avatar

[mod says] All off-topic, derailing quips have been removed. All future quips in the same vein will be removed as well.

Ummmm's avatar

I don’t have a chonic disease and I sincerly feel sorry for those of you who do.

I would also l extend an apology to evryone I annoyed with my previous comment. I know it was rude to put unwanted and random things.

cyn's avatar

I have OCD…is that rare?

_bob's avatar

@shilolo My post wasn’t a quip. Hmpf.

shilolo's avatar

@bob_ One derailing quip lead to another, and another, and another. Oh, and FYI, color blindness is not particularly rare, and doesn’t really qualify for chronic status either (more like congenital).

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_bob's avatar

@shilolo I’ll stop considering it rare when people stop asking me “what color is that?” every time I tell them I’m color blind. I know it’s not chronic. The question was “rare or chronic”.

augustlan's avatar

I have multiple auto-immune conditions, but I have no idea how rare they may be. Had Hyperthyroidism, now have Hypothyroidism. Exercise induced asthma, kidney disease, Sjogren’s, multiple allergies, hyper sensitive skin, eczema. On top of that, I also have Fibromyalgia. It sucks. Eight Rx pills a day and most of them aren’t even cheap. :(

cak's avatar

Mine isn’t rare – at least I don’t think it’s rare. If anything, I’ve learned from several oncologists is just might be under diagnosed.

I have CLL, Chonic Lymphocytic Leukemia. I’ve been treated for is with chemo (the protocol CHOP…we called it PorkChop – had to make it funny, somehow.)

CLL

I have also been treated for other types of cancers and my brain seems to like to develop tumors, both malignant and benign. My husband calls me lumpy I have a few choice names for him!

basp's avatar

Graves disease. Teartable with daily medication.

DrasticDreamer's avatar

I also have endometriosis. It’s been painful for years, but it keeps getting progressively worse as time goes on. Sometimes, if I try to exercise I bleed. If I stretch too far, I can bleed. If I go on long walks or hikes, I can bleed. There’s pain every day – some days it’s mild, other times it’s severe. But it’s always there and noticeable.

I talked to my doctor about surgery, but she advised against it simply because once scar tissue is removed it has a very high probability of coming back. Because it’s so expensive, the idea of going through multiple surgeries isn’t an option. It scares me because the idea of the pain getting much worse than it already is on some days is almost unimaginable. That, and I’m scared that should I choose to have children someday, I might not be able to.

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RedPowerLady's avatar

@DrasticDreamer Have you looked into a specialist? This one I saw has a much different surgical approach and idea of endo. than many typical dr.s. Just one visit with him made me feel better. The cost is still much, between 6–8,000 for the surgery (not including hospital costs). His website

DrasticDreamer's avatar

@RedPowerLady No, but I’ve thought about it. Right now, that’s still way too much money for me. There’s no way that I could pay $8,000+. Just in case though, I’ll check it out and save the link. Thank you. :)

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shilolo's avatar

[mod says] To have this serious thread derailed so some people can have their “fun” is unacceptable. As I said above, off topic quips will be removed.

_bob's avatar

So much for laughter being the best medicine.

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tyrantxseries's avatar

I have schizophrenia , it’s not a chronic disease but only 0.4–0.6% of the world population have it (I think 1 percent of Americans) .
It has a huge impact on my life getting progressively worse

Aethelwine's avatar

I developed shingles at the age of 20. It’s not a rare disease but rare for someone of my age. It usually occurs in the elderly or people with weak immune systems (me). I usually get about 2 outbreaks a year, it would be 5 if I didn’t take my meds. It can be really painful and the rash itches like no itch I’ve had before.

chyna's avatar

@augustlan How did you go from hyper to hypothyroidism? Did the medicine do that?

RedPowerLady's avatar

@DrasticDreamer I understand, it is way too much money for me as well.

SuperMouse's avatar

I don’t know if it is rare, but I have scoliosis. The curve in my spine is quite visible and my sides are uneven, it has doomed me to a life of crooked skirts and no bikinis (not too sad about that though). I was also born with congenital hip dysplasia but it was successfully treated when I was a child and has had no lingering impact. Though from what I understand that hip dysplasia is actually quite common; in German Shepherds!

chyna's avatar

@SuperMouse Also in great danes :)

cak's avatar

@supermouse When I found out I had CLL…I was told it was very common in 50+yr old males. I was around 34 when I was diagnosed and I am a woman. My husband calls it my old man (not that 50 is old…he’s talking about the aging of the disease) disease.

Kayak8's avatar

My 3 year old nephew has Addison’s Disease. It is somewhat different in kids than adults (he has always had adrenal insufficiency whereas for most adults they had some function. JFK likely lost adrenal function from years of taking steroids for his back problems).

It took a long time to diagnose. Every time he crashed and was rushed to the ED at the Children’s Hospital, they would give him epinephrine which would mask the symptoms of the adrenal insufficiency. He takes liquid meds because he is a little kid, but replacing the cortisol his body needs has totally changed his personality (for the good). Now he has energy and is a happy little guy.

We have a dose of meds that we keep on hand if he experiences a crisis (fight/flight kind of thing that would use up all the adrenaline of a non-Addison’s kid). The emergency meds are just in case a local hospital might not have the peds dosage of these particular meds available. It is not like diabetes where you need to treat it immediately but more a concern that the necessary supply might not be available.

His meds will have to be adjusted as he grows, but he (and his parents) have adjusted to the routine.

SuperMouse's avatar

@cak don’t you wish you just didn’t know stuff like that?! Honestly, whenever I mention the hip dysplasia to anyone I hear about their dog who couldn’t walk – even my chiropractor did it once!

cak's avatar

@SuperMouse sometimes I have to laugh, but when my mother said Grumpy Old Men reminded her to call me…a jab at the old man thing….grrrrrrrr!!!!

essieness's avatar

@Kayak8 Wow, it’s interesting to hear another Addison’s story here on Fluther. I have not known any children with the disease. The form I have is the purest… nothing triggered it. I never had any other issues that could have caused it such as taking steroids and coming off them, so it’s even weirder that I got it. I keep a vial of injectible hydrocortisone and a stash of needles for when I have a crisis. I’ve only had to use it once in a little less than a year, thank God! Crisis is not fun!

Kayak8's avatar

@essieness
My nephew actually has an x-linked chromosomal thing of which one of the elements is Addisons. One of the others is muscular dystrophy which, gratefully, he does not have.

I can’t even begin to tell you the difference in his personality pre- and post-treatment. He is like a totally different kid. My sister commented on how sad it was to meet her real son for the first time at age two (how long it took to diagnose and treat).

I hope you have a good relationship with an endocrinologist who can work with you to sort out the daily meds and the crisis meds. That really does seem to make all the difference.

La_chica_gomela's avatar

I’m in remission from an extremely rare autoimmune disease. Only about 350 people in the US are affected by it.

casheroo's avatar

I also have endometriosis, but refused the surgery until I’m done having children. I don’t want it to affect my fertility. My mother just had her uterus removed because of it. She had it severely embedded into her uterus and intestines.
I suffer from chronic ovarian cysts as well. I want my right ovary removed once we have one more child, because that ovary is the enlarged and painful one. After that, if we can’t conceive anymore, I’ll still be happy with two.
I also suffer from anxiety, but have been able to manager it for over two years without medication. I was considered disabled through the state for a while, because of my anxiety/agoraphobia.
And I suffer another chronic condition, but it’s TMI.

whatthefluther's avatar

I have familial ALS which has been fairly well chronicled here. I deal with it…wtf

YARNLADY's avatar

My oldest Grandson (who lives with me)has Marfan. Among other things, it causes curvature of the spine, and elongated limbs. He is 6’5” and at risk for heart disease and detached retna. He has a very noticable hump in his back (shoulder). I am really worried, because his health insurance ended when he left school, and we can’t afford the six month x-rays that would detect potential damage to his internal organs.

bythebay's avatar

I’ve been living with Endometriosis for over 25 years; but with great care and several surgeries to ‘clean up’ I was able to conceive my two amazing children. Now it’s just annoying.

I have mild IBS which probably stems from the lactose intolerance I ignore. You only live once, I’m eating the ice cream!

I also had a malignant brain tumor; removed without complications and I am gratefully done with treatment – hopefully forever!

Life is filled with bumps, but also VERY good!

RedPowerLady's avatar

duplicate post, sorry

RedPowerLady's avatar

@casheroo Were you ever pregnant with a cyst present? That is the surgery I’m trying to afford right now, a cyst removal. We had to put off TTC because of it which has been devastating since we lost our son. Sigh.

casheroo's avatar

@redpowerlady Yes, I had a cyst when they found out I was pregnant with my son. I had just had a miscarriage the month before. What sort of cyst do you have? I get Hemorrhagic cysts and corpus luteum. Are you having trouble conceiving because of it? I have heard it can affect fertility. I don’t understand why you stopped TTC. I would think that any attempts to become pregnant should continue. When I got pregnant, they told me I had a cyst and that it would rupture or dissolve during the pregnancy. It went away at some point, but it did cause discomfort.

RedPowerLady's avatar

@casheroo I have a cyst they are calling an endometrioma. I think the concern comes in because of the size of it; large but not overly large. Was your cyst small/large? Luckily we do not have problems conceiving right now (we’ve had a son who passed away due to an unrelated congenital condition and we’ve had a miscarriage which are very sad but at least mean we can get pregnant). In all honesty I do not want to stop TTC because of it. The specialist told me that two problems can come of being pregnant with a cyst. 1. the pregnancy causes the cyst to rupture and the dr.s get worried because they don’t know for sure where the pain is coming from (this risk I think I could deal with). 2. the cyst causes pressure on the uterus which makes baby in an incorrect birthing position and forces a c-section (this one scares me a bit, not because of c-section just the fact that it affects baby). And I also read online, which I should not have done haha, that some OBs strongly urge for cyst removal during pregnancy if it doesn’t dissolve (which scares the beegezus out of me). So I suppose they’ve got me all worked up. I have a couple months yet till my insurance kicks in so I’m trying to be responsible, lol, and put off the decision to TTC at least until I have reliable insurance. But really the idea of having a complicated pregnancy scares me because of our previous loss. Of course the idea of not TTC has caused me extreme anxiety. So I caught myself up in a catch 22. Now if the Dr.s would just give me a straight answer this might not be so confusing, lol. Anyhow sorry that was long and roundabout but it was just nice to hear from someone who has done the exact thing that is worrying me.

casheroo's avatar

@RedPowerLady hmm, I guess because it’s an endometrioma, it’s much different than my sitation. And mine don’t get larger than 5cm. I think it’s probably best to wait for the insurance. I think the risks don’t seem too severe though. I guess when I talked to my doctor about it, they weren’t really concerned so it put me at ease. They gave me more frequent ultrasounds, which I didn’t mind. I’ve never had any bleeding when cysts rupture, the fluid/blood pools into the pouch of douglas, so I wasn’t concerned about my son (in that aspect) when I was pregnant. Hopefully by the time insurance kicks in, your cyst will be gone! Good luck

RedPowerLady's avatar

@casheroo In all fairness I had a crappy dr. when this was going on, that is why I went to see the specialist. I’ll probably feel much better when my insurance kicks in and I can get a helpful dr. on my side. Thanks for the talk though, quite helpful.

augustlan's avatar

@chyna I apparently had hyperthyroidism (Graves Disease) for a good long time before I knew I had it. I was always super skinny, had tons of energy, and required very little sleep for the first 15 years of my life. Then I went into Thyroid Storm, which is basically a flooding of the body with thyroid hormone. Thyroid storm is unusual, but when it occurs, it is a life-threatening emergency. (Hmm, so I guess that one is rare). Huge amounts of weight fell off me, no sleep for 3 days, went insane, you know… the usual. ;) It took almost 2 years to get that situation under control, and at the end of that time – at age 17 – my thyroid was dead. The doctors said it just burned itself out. I’ve had hypothyroid (Hashimoto’s) ever since. I still miss all that energy I had!

adreamofautumn's avatar

I have celiac disease, no longer “Rare” since they are diagnosing it more and more frequently, but definitely chronic. As of right now there is no “cure” and no medication, only a 100% gluten free diet for the rest of my life unless they manage to find a cure or medicine. Now that i’m on a gluten free diet it’s not too bad, but left untreated there is a good chance it will kill you eventually and probably in slow and painful ways. I deal with it because I have to, however being young (and in college was particularly hard) and having to say “oh I can’t eat that, oh I can’t drink beer, oh I have to bring my own alcohol to all parties just in case there is only beer, oh I can’t go out to eat with you there because they made me sick last time, etc etc” definitely sucks. Better than dying though I would reckon.

casheroo's avatar

@adreamofautumn I follow a modified gluten free diet, it’s hard!

adreamofautumn's avatar

@casheroo yah it’s definitely not a good time, but more and more gluten free food is coming out all the time, that helps a bit. Europe is the place to be for gluten free living though, I wish the US would catch up already!

turtlegrrrl's avatar

I’m married, does that count?? I keep telling my doctor that if he will just dope up my husband, I wouldn’t need any drugs at all.
I have sturge-weber syndrome, or, encephalotrigeminal angiomatosis. It is not common and is caused by a port wine stain or other birthmark on the face or head & affects all kinds of things. I am bipolar, which is related and chronic.

turtlegrrrl's avatar

I alo have endometriosis and I deeply sympathize with those of you who do. It hurts. I had a partial hysterectomy (thank GOD) in July when I had my third son. They removed most of my female plumbing due to the cervical cancer I was diagnosed with at two months pregnant, so I won’t ever have to worry about that monthly crucifixion again, and it is glorious!!!!!

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