r/dwarfism

Hello!

I have pituitary dwarfism. It's genetic, my younger brother and I both have it. Our pituitary glands are much smaller than they should be. As far as we can tell the growth hormone is the only thing that wasn't done properly, though once we became adults it seems doctors fully stopped caring about our conditions. That's a separate story though.

I was put on hormone replacement therapy as a child, and today I'm 5'3. I've always referred to myself as a dwarf, since I have the medical condition and am very small compared to the average person. But since medical intervention pushed me past the 4'10 legal definition I keep reading about, I've always been a little nervous about whether this is appropriate or not. So I came here for 2 main reasons:

1. to check that my use of the word dwarf is okay

2. to hopefully connect to a community that will understand some of my struggles as someone with this condition. I have great friends and a loving fiancé, but they don't always understand how frustrating it can be when I'm just seen as a tiny thing when I'm trying to be taken seriously

In truth, my first draft was a weepy rant about some of the ways it has affected me, but I decided it would be much nicer to introduce myself on a more positive note.

Based upon a suggestion from the community, we're going to try a weekly thread! Are you a new parent or expecting a child with dwarfism looking for resources? Maybe you're a seasoned vet with grown kids and you want to share what worked for you. This is the place! As things are suggested we will add resources to the main body.

We do not discriminate in this thread, whether you're an average height parent or an LP parent, but if we feel the AP parents start to overwhelm/bully those who do have a lived experience with dwarfism this will chance.

If you have a question, but would rather it be asked without your username attached, feel free to use ModMail and I or another mod will post it in the thread instead!

I’m from Romania with achondroplasia. I don’t usually make posts like this, but lately I’ve realized that I’d really love to meet someone special and build a genuine connection.
I’m not looking for anything forced or rushed. I simply miss having that person you can talk to for hours, go on random walks with, share your thoughts, laugh about silly things, and create memories together.
A little about me: I’m a festival DJ, and speaker for children and teenagers with disabilities. I love music, deep conversations, festivals, spontaneous adventures, and getting to know people on a deeper level.
If anyone feels like chatting and getting to know each other, feel free to send me a message.
You never know where a simple conversation might lead 🤍

Hi everyone. Long time lurker, first time poster.

My one year old is short (no diagnosis yet). He is starting to walk, and I should buy him shoes, but his feet are 9 cm which I think is a size 16/17? There are no stores that carry shoes this size with an actual structure for walking. Just those tiny boots for newborns that are just meant to be cute.

So, does anyone know where to buy shoes this size online? I'm in Europe.

Hello everybody

I have just a couple genuine questions I have been wondering and worrying about.

So, my girlfriend and I have been together for 2 years and she has dwarfism and I do not. (I never have asked what type of dwarfism she has I probably should) we are both 26 and we have had the thinking about our future and kids talk, it is something we agreed to but I have some big worries about going through with it

1. Bullying. this is the biggest one. I wanted to ask how bad the bullying may be if we have a child with potential dwarfism? My girlfriend says she never really experienced much of it but has had stares at most. I have been googling relentlessly for the past week about the social stigmas about dwarfism especially from children. My most particular google search is "can a kid see a person with dwarfism as a child themselves?" The reason I googled this is because I worry when our future child is an adult and out doing basic necessities such as grocery shopping, taking the dog out for a walk, going out in about in the general public, going to get the mail at the post office, are children going to point and stare and say names and mock every time they have to go out? I don't want to set my kid up like that because if that's the case that is no life of constant public harassment because children can be absolutely ruthless and blunt whether they mean it or not. I myself have been bullied both when I was child when I'm school and now as adult by younger children because I'm overweight, whenever I have to go out and about and I'm an average size person and it hurts my self esteem. I can't imagine what a little person can go through...I'd feel pretty terrible if this were the case...

2.) Being taken seriously because of their height by both adults and other children this concerns me because what if my child wants a job of authority when they are an adult? Like a teacher, Educational Assistant, a Lifeguard? etc Will they be listened to or mocked?

are these concerns valid? Or am I just too very anxious about all this?

Have any of you gone through what I have described here? I'm very interested to read your thoughts and comments and advice. I appreciate your time for reading.

TIA!

Hi there!

My sweet, smiley nephew has his case currently being reviewed by CHoP, but we’ve suspected since he was still cooking, any the certainty only grows.

Since he is undiagnosed, for lack of a better term, my sister and her husband haven’t been in connection with anyone that can give them resources and advice. I’m more internet/reddit savvy, so I wanted to come here to see if anyone has any tips they would share to make my nephew’s infant hood safe and happy!

For instance, he gets lots of tummy time, but he always loved his walker/bouncer. Having researched Achon I now know that these curved/soft seats can contribute to kyphosis and should be avoided. Does anyone have any advice on this subject? Has anyone modified a bouncer or found one that is appropriate? Or is it definitely NO GO?

In a similar vein, in an effort to help him have sitting time, is there a floor seat that anyone would recommend? I’ve read that their spine/neck should be supported the entire length, and most of the seats (like Bumbo) only support the lower spine.

Any other advice would be appreciated while we’re in this waiting stage! Thank you in advance. <3

I've been a massage therapist for 18 years, and I have only had one little person as a client. I would like to expand my education to help everyBODY. And also, to be a safe space for people that experience marginalization. I know there's varying types of dwarfism, and varying types of musculoskeletal issues. Also, please tell me ways that would help any LP clients feel comfortable coming to my clinic, and getting a massage. Thank You!