Rare Disease Day 2024
It's a Special Rare Disease Day, as this year it falls on the least common revolving calendar date - February 29th!
Keep an eye on this post as we hope to include more activities.
You can check out events off of 7 Cups at the Rare Disease Day site
What are your experiences with rare disease whether it's directly or knowing a family or friend who has one?
Check out this thread to add or remove yourself from our taglist.
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From good ol' Wikipedia:
"Ménière's disease (MD) is a disease of the inner ear that is characterized by potentially severe and incapacitating episodes of vertigo, tinnitus, hearing loss, and a feeling of fullness in the ear. Typically, only one ear is affected initially, but over time, both ears may become involved. Episodes generally last from 20 minutes to a few hours. The time between episodes varies. The hearing loss and ringing in the ears can become constant over time."
"Episodes" can keep me inside my crackerbox apartment for days at a time. Meniére's is one of the natural evils that have robbed me of almost any happiness & up until very recently, the worst of my afflictions. As of now, there is no cure with the possible exception of "destructive surgery": removal of the eardrum, cochlea & other parts of my inner ears & probably cutting the main nerve trunk they're connected to. This would mean permanent deafness, of course...
...but given what it's done to my life, I think deafness would be a small price to pay for getting rid of the main cause. Most surgeons won't do it, however.
(Got any advice on finding a cooperative surgeon? I'm open to suggestions, people!)
You can find the full article here.
- I've spent whole days in bed. In my office chair. In the easy chair, when I had one. (It wore out in six years)
- I have fallen > a half-dozen times. The upside is now I'm not as scared of falling as I was at first.
- Meniére's isn't the only reason but I have become more sedentary overall...not a good thing. Being outta shape sucks.
- The head pain never goes away entirely. Ditto the dizziness. Ditto the tinnitus.
- I have to watch my sodium intake; too much at once can trigger a flareup. So does a lot of stress. It also can, & does, flare for no discernible reason.
That is what it's like to be me.
@slowdecline48. I wanted to see if the surgery you asked about was being done near me so I looked up Meniere’s University of Miami. The surgery you spoke about was listed there but it says only performed if no useful hearing in the ear. There were some other procedures and surgeries mentioned . If you are interested you can google the site or I can post the names of the procedures.
I'll have to check into it, thanks. Didn't know there was more than one kind of surgery for this problem.
"No useful hearing in the ear"...that could be interpreted in a few different ways. I do have tinnitus...a bit more in one ear than the other...
@AffyAvo
Hi, AffyAvo,
Thank you for posting this. I learn so much from your threads.
I have been an educator for over 35 years in the field of exceptional needs, so in the course of this time, I have had students in my classes who have lived with very low incidence diseases or disAbilities.
One student was one of only five in the world to have the particular chromosomal anomaly he lived with. He is now a high school graduate and is working in a supported job.
I feel very fortunate to have had these experiences and learn just how passionate the medical field and particular doctors are about following and also helping to try to make the quality of life better for the people whom these diseases affect very greatly at times.
Thank you again for bringing awareness to this topic.
I wish there were more solutions that are humane and sincere, that actually improve quality of life from the perspective of the people who are living with these challenges.
This is my constant hope, that we don’t give up, and that we find some solace in this topsy turvy world of ours, that we keep working to make the lives of the living better, rather than killing each other off in wars.
Love and Courage,
Rose
@AffyAvo
Hi Affy! 😊 ❤️ Many thanks for your fantastic forum post and for acknowledging rare disease day! I love learning something new every day and I had no Idea there was a specific day set aside for us.
I guess there are a couple of odd things about me. I have rarely spoken about them around here if ever. You made this forum post, you cared and you asked so I am more than happy to contribute! Thank you for asking my sweet friend! ❤️
One thing that I suffer from is scoliosis. It's a deformity, curvature of the spine. Also, the muscles and bones in the bottom of my back stopped growing at age 9. It's quite painful, a chronic pain issue as I have the muscles and bones of a 9 year old supporting the body of an adult.
I don't take pain medication for it as it started at the age of 9 and so everyone has choices to make. I knew this would be a life long issue. I can only imagine what my liver would look like at this point so if one thing doesn't get you, I guess another will. With acceptance comes peace and I accept that I will live with chronic pain.
Trigger warning : graphic medical ?
There are so many things that I am not supposed to do, told I'll never be able to do however, life happens and we simply must "do it" many times. As a teenager I was told the only solution is to put a steel rod in my back, a "halo" around my head and bolt it all together by drilling holes into my skull and connecting with screws. I chose to decline. Gee, talk about limited mobility. I'd rather take my chances and work with what I got! Definite versus maybe. Immediate versus later.
I was warned that If I didn't I'd be in a wheel chair and soon. Still going strong, no wheel chair yet. No shame in my game. When it comes for me, get's the best of me, wheel chair it is however, I'm thinking when it does it might look "age appropriate" (in the judgmental worlds eyes) and I'll be skootin' around doing wheel chair races with some AARP members. *high fives* 😊 It's soooooooooo on!
At least I am a planner and my intentions are to get an old school bike horn on that wheel chair if needed. *beep beep* here I come! 😊
The other oddity with me is that I suffer from Raynaud's Disease. I have an extreme, visceral reaction to cold weather. This too is quite painful and once I get cold it takes hours to warm up. It's as if I can feel it in my bones. My hands and feet can feel numb or painful too just with a bit of a draft. Happens all of the time, happening right now with my hands. You get used to it and you just keep typing. 😊
It also causes what Dr's. call "mottled skin" in my case. If I don't have a tan/tanning cream to conceal it, it looks honeycombs all over my body....you can actually see my "inards" from my "outards", lol 😊. I just call it "alien skin" as it sure is something! I'd be a medical students dream to see the inner workings of a human. Fun! woooo hooooo! 😊
Year round I wear long pants and long sleeves, even in the middle of summer. If I'm in direct sunlight and it's really warm outside with very little breeze, short sleeve and long pants will work. I'm definitely a summer girl.
For me, it's not all gloom and doom (at all)! Interestingly enough, I had quite a stretch as a model and for major brands. Because of the scoliosis, one leg is longer than the other, I auto correct for it when I walk or stand all of the time and especially for run way work. No one can notice but a physician. For swim suit modeling, no photo's were taken of my back and if so, notes were included to have it air brushed if evident and space heaters brought in for shoots. Mottled skin, tanning cream is amazing for coverage and it doesn't effect my face. Face shots not an issue and no issues for television commercials. Up an over, get it done kind of thing.
I was 5' 8 1/2" back then. Barely made the cut off for height requirements. Scoliosis, well, this little gal is shrinking. I'm 5' 6 3/4". It seems like the grass is always greener on the other side. I didn't exactly like being "tall" any way. I personally like my height better now.
Sending out big *high fives* 😊 and big *hugs* ❤️ for any of us that are struggling in any way, shape or form whether its obvious to the world or not. I know first hand how hard it can be to have a disease(s) and ones that aren't readily apparent for others to see. Many times we are just quiet about it, don't complain and just get on with it. Stay great my sweet friends! 😊 ❤️
@SparkyGizmo That's quite a story! Scoliosis isn't all that rare--I have a little myself. Quite a few adults have it--but the rest of your conditions definitely are. Have heard of Raynaud's before; however I hadn't met anyone with the disease until this evening.
If it weren't for the safety rules here (& concern for member privacy), I would ask to see a few pics from your modeling days. Most of the raw material for my artwork either doesn't have any people in it, or shows people I do not know. A photo of someone I do know (even if only by a pseudonym online) might be more interesting to draw from.
@slowdecline48
Hi Slowdecline! 😊 ❤️ I agree. Scoliosis isn't really all that rare (maybe for me it's to the degree). At first blush, I questioned whether I even belonged on this thread and my initial thought was that @AffyAvo cares about me and would enjoy me contributing and being here no matter what! ❤️ Affy has always been so very kind to me and I am grateful for them. ❤️
Second thought was, well....I guess If I have to check in for "rarity", Raynaud's certainly does qualify, lol 😊.
I don't really talk about me much around here or my ailments. Again, with acceptance comes peace and I've made peace with it all as well as my role as a listener is to truly be "other" focused. But you know.....admittedly...it felt really good to be asked. And it felt really good to share. I wouldn't have shared unless asked as these aren't things that would come up organically in conversations unless it was with someone that knew me quite closely in real life and were to question things (like....."uhmmmm, you know it's like 98 degrees out here, what's up with the long sleeves"? ). 😊
I'm sorry to hear that you experience scoliosis as well. I'm hoping it doesn't cause you pain. I'm also so sorry to hear that you have experienced hard moments, pain, discomfort with what effects you from the "rare" perspective. I send you big *hugs* ❤️
Agreed, me sharing my likeness here on the platform would be frowned upon as we are asked to stay anonymous. Trust me, you aren't missing out on much! A great deal of modeling has a lot to do with good bone structure (at least what can be seen visually), being photogenic (sometimes not the worlds ideal of beauty as things can look different on film), being able to take direction, height, weight, good lighting and a great photographer to catch you at your best and at all of the right angles. I go to the grocery store with no makeup, hair pulled up in a bun, hoodie and sweatpants, meh? I'd qualify as "cute" at best and that's about it.
If you wanted to try and draw a likeness, it would be the body stats (measurements) of Jennifer Anniston back from when she worked on "Friends", but 2 inches taller (even though I have shrunk because of scoliosis) and a few pounds lighter than those stats. Best mash up for face would be Jennie Garth back from their "90210" days with the upturned "pug nose" and freckles (those always got airbrushed out) of Judy Garland from the Wizard of OZ along with Judy Garlands hair color while in that movie. You could try your hand at it. It would be amazing to see what you come up with!
One never knows? In real life it is a possibility that you have walked across my likeness before. Funny story for you....I had an ex boyfriend call me once and say "I saw you today". I was like, I don't think so. I'm at home, why, are you in town? "No, I'm at home" (different state). He then said "We are going to steal you tonight". 🤔 ???? He and his friends had walked into a store and saw a life size cardboard cut out of me, lol 😊. It was humorous as he said "I told you one day I'd get you back". Hilarious!
*high fives* 😊 and *hugs* ❤️
@SparkyGizmo So you're a Listener but you "don't take member chats at this time"...are you on a self-care break from it? I can understand if that's the case, as I've heard of members being "inappropriate" in chats more than once. 🤦🏼♂️
...every so often, I am embarrassed to be a man. Evolution is a major factor in our behavior--when you're responsible for propagating the species, you must do the job--but that's still not an excuse. But anyway...
With a back like that, you must spend a lot of time laying down. In such a situation, a home library can be a big advantage.
If you can rock a hoodie & jogging pants with all that going on, you're doing great. I am not cute. Used to have decent abs & great legs but that was an eon ago...these days I look best with a shaved head. I have a great face for radio & a voice for print. 😏
If you're curious (CW: shameless horn-tooting) you can look at some of what I do here. You can read some dreary poetry here. There's also a thread with calligraphy which I was going to let d!e, but it keeps getting attention....might post in it later. Only one other person in it has posted anything, which is irritating.
@AffyAvo
thank you for bringing awareness to this crucial day
@AffyAvo Mucopolysaccharidoses are a group of inherited metabolic diseases caused by the absence or malfunctioning of certain enzymes the body needs to break down molecules called glycosaminoglycans. Glycosaminoglycans are long chains of sugars (carbohydrates) in each of our cells.