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Living with Dwarfism

Three women with dwarfism smiling.
  1. Clothing & Shoes
  2. Parenting
  3. Adaptive Equipment
  4. Education & Scholarships
  5. Ableism

Clothing & Shoes

Making Your Own Clothes – finding patterns that fit little people.

  • http://www.petitepluspatterns.com/. Lots of great patterns for short adults of all sizes. This friendly web site has some handy tips for sewing and great links.
  • I wear shirts as dresses Doris is a 20-something year old full time paralegal by day and fashion illustrator/content creator by night! She has more clothes than her room can fit, but continues to shop regardless, somehow finding places to squeeze in her new garments. Check out this amazing website and blog for fashion ideas!

Adaptive clothing for wheelchair users and people who need help dressing.

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Shoes

People with Kniest/SED/SMD often have unusually shaped feet. Some are very wide, other extremely narrow, some flat, others very thick. Some people have small feet but very long toes. Here are some site to find shoes that fit and look great. Please contact us with any suggestions or if you have any questions.

Orthotics:

Taking care of shoes: Good shoes are expensive. Here are some tips to help your shoes last longer.

  • A good shoe repair person can put any sole on any shoe. For example, you could put hiking soles on your worn out shoes and end up with long-lasting, non-skid shoes for much less than a new pair of shoes.
  • If your shoes is less than an adult size 6, it can be hard to find new soles. If this happens, have the shoe repair person CUT OUT THE MIDDLE of a sole and glue it on in two pieces. It lasts just as long, fits, and looks fine. 
  • Shoes last longer if you rotate them. Wear shoes no longer than two days in a row, then wear another pair.
  • Get custom orthotics for your shoes. They will be more comfortable and wear better. A podiatrist (foot doctor) will take a mold of your feet to make a pair for you.
  • Get your shoes stretched by a professional shoemaker if they are too tight. You can also apply rubbing alcohol to your shoes and purchase a device to gently stretch your shoes.

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Suggestions From Families with Kniest, SED, and SMD for finding clothes that fit

Infants/Toddlers

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Suggestions for clothes for Young Adults/Adults

8 year old with SED. He is wearing a t-shirt that says “Proud Latino,” red shorts and a red white and blue hat.
  • Article on how to find clothes if you are very short
  • Capris length jeans and leggings are a GREAT FIND. Stock up when you see them. Many people with Kniest or SED or SMD report that they feel “custom made!”
  • If you buy pants that are too long and intend to hem them later, make sure they fit well in the seat. Otherwise, after you hem them there may be a problem when you sit: the pants come 2/3 up your calf! This is because the cut was not right in the seat. The inseam needs to start at the right place.
  • For hemming pant legs leave extra room otherwise the length can be too short! Be sure to leave enough room for the hem PLUS enough fabric to fold under. A common mistake is to not leave enough room at the end for both the hem and fabric to tuck under. With shorter legs, this is less room for error. Remind your tailor of this important tip for sewing for people with short legs!!! So if you need a 22 inch inseam, make sure that the tailor cuts at least 24 inches.
  • Crop Tops Look for crop tops in stores. These are often big enough around and not too long.
  • 3/4 length sweaters 3/4 length sleeves can fit perfectly right off the shelf.
  • See links for adaptive clothes for links to stores who sell dwarf-friendly clothes. Your fabulous outfit is just a few clicks away!

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Jewelry Tips for people with dwarfism

  • A jeweler can shorten necklaces. you can also do this with patience and a very small pair of pliers. If you want to share pieces with a taller person, insert a loop to close the chain in TWO places.
  • If you hands swell up and your fingers are much bigger at the end that at the beginning of the day, there are some braided rings and puzzle rings have a little more wiggles room so they are easier to take off if you hands swell up.
  • Necklace converters are easier to use if you have arthritis.

Adaptive Equipment

  • Three men with SEDC. Man in the middle is standing. The men on both sides are identical twins in identical suits riding riding mobility devices.
    Three men with SEDC. Man in the middle is standing. The men on both sides are identical twins in identical suits riding riding mobility devices.
  • Young woman in a beautiful sundress and white shoes using a wheelchair.
    Young woman in a beautiful sundress and white shoes using a wheelchair.

Cooking

Driving

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Everyday adaptive equipment

  • Everyday living is easier with a few basic supplies: sock aid for socks, shoe horn for shoes, grabbers (short & long) to pick things from the floor, wear slip-on shoes such as loafers, a long handled sponge for bathing.
  • Try a sock aid to put on socks without having to reach.
  • Long handled shoe horns are easy to use and help shoes last long, too!
  • Many little people use dressing stick with a hook.
  • Must have for a person with Kniest/SED/SMD: long and short handled reachers.
  • Leave reachers around the house so you don’t have to carry them from room to room. You can hang them using easy to install hooks.
  • Peri Bottle: Portable Hand Held Travel Bidet Sprayer for Women or Men
  • Portable footrests are great. Life is too short for uncomfortable chairs! Try Travelsmith folding footrest

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Ableism

Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability.

Some examples of ableism in medicine:

  • Physically inaccessible offices. Is the office wheelchair accessible? Are there adjustable exam tables? Wheelchair accessible scales?
  • Is the physician speaking directly to the patient of speaking over their head to a family members? People with disabilities need to be part of shared decision makers with their providers. This means presenting the patient with treatment choices and letting the patient chose.
  • Not having a blood pressure cuff that fits. Using a blood pressure cuff that is too big or too small will result in the wrong measurements.
  • Using BMI alone to diagnose someone as being overweight. BMI should never be used to determine if a person with dwarfism is overweight. BMI has is not an accurate measure of health and has been discredited by the American Medical Association in 2023.

Resources and references on ableism:

Parenting with Dwarfism

  • Adorable girl with Kniest. She has red hair and is concentrating on coloring.
    Adorable girl with Kniest. She has red hair and is concentrating on coloring.
  • Sweet picture of a young child with SEMD holding a frisbee.
    Sweet picture of a young child with SEMD holding a frisbee.
  • Young boy with Kniest and the world's biggest smile. He is wearing a red spider man hat and a 'bug expert' shirt.
    Young boy with Kniest and the world’s biggest smile. He is wearing a red spider man hat and a ‘bug expert’ shirt.

Parenting as a person with dwarfism/person with disabilities

  • The National Research Center for Parents with Disabilities: The National Research Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. The Center is guided by an advisory board composed of parents with disabilities or family members of parents with disabilities to ensure that our work places their needs at the forefront.
  • https://lookingglass.org/ Through the Looking Glass’ mission is: “To provide and encourage respectful and empowering services—guided by personal disability experience and disability culture— for families that have children, parents, or grandparents with disability or medical issues.”
  • https://disabledparenting.com/ is on a mission to leverage technology in order to create opportunities for parents and prospective parents with disabilities to connect and interact, and serve as an information clearinghouse for relevant information about adaptive parenting. The DPP also seeks to inform social policy through the development of resources, created by and for the disabled parenting community, and to promote social justice for disabled families.
Mom with SEC feeding her adorable baby. Note the accessible crib to her right.

Raising a Child with Dwarfism

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Education/Scholarships for people with Dwarfism

There are many scholarships available for people with disabilities! Education is especially important for people with dwarfism. Your size has nothing to do with your ability to learn! Don’t let people’s attitudes about disability impact your decision be a lifelong learner!

We’ve listed some scholarships here. Contact your school and use the internet to find more!

There are many other scholarships available! Please contact us with suggestions.

Consider summer internships for your teens! It’s a great way to learn! There are also paid summer interns for teens.

  • Adult with SEMD. She is next to a huge statue of a bug. She is using a small electric scooter as a mobility device.
    Adult with SEMD. She is next to a huge statue of a bug. She is using a small electric scooter as a mobility device.
  • Beautiful woman with SMDK in a European city. She is wearing a white shirt, blue jeans and had beautiful braids.
    Beautiful woman with SMDK in a European city. She is wearing a white shirt, blue jeans and had beautiful braids.