Beautifully Made Community

Spreading love, one rock at a time! 🎨💕✨


📸: Boston Children’s Hospital & Beautifully Made Community Event 2025

Discovering that powerful sense of relatability and community really changes everything- it’s pure gold. Challenges are understood, successes are celebrated and incredible connections are forged. You’re not alone on this journey. There’s many resources, organizations, and advocates who will share support, guidance & open up meaningful connection experiences!

Check out our website to view our recommendations or to simply learn more about limb differences if you’re new to discovery.

https://www.beautifullymadecommunity.org

[email protected]


📸: Boston Children’s Hospital & Beautifully Made Community 2025 Limb Difference Event. Made possible by

✨Limb Difference Spotlight✨
Apert Syndrome

“Apert syndrome also known as acrocephalosyndactyly, is a genetic difference that causes fusion of the skull, hands, and feet bones. Apert syndrome occurs in one out of every 65,000 to 88,000 births.”

Children with Apert syndrome typically experience craniosynostosis and midface hypoplasia. The characteristic feature that distinguishes Apert syndrome from other types of syndromic craniosynostosis is the presence of syndactyly— a condition in which their fingers are webbed or conjoined. There are three main types of syndactyly in Apert syndrome: Type I (“spade hand”): the index, middle, and ring fingers are fused, and the thumb is free. These patients typically have a “flat” palm.
Type II (“mitten hand”): the three middle fingers and the thumb are fused, and the palm curves inward or is concave. Type III (“rosebud hand”): All fingers and the thumb are fused.
Complex syndactyly benefits from specialty surgical care to release and result in the greatest degree of function that can be achieved.”

✨RESOURCES✨

▫️Facebook-
🔎Apert Moms of the USA
🔎 Apert Syndrome
🔎Apert Syndrome and Syndromic Craniosynostosis Awareness
🔎 Apert Syndrome Information and Research Group

▫️Instagram-






▫️Websites-
▪️ https://www.childrenshospital.org/conditions/apert-syndrome
▪️ https://www.chop.edu/conditions-diseases/apert-syndrome
▪️ https://my.clevelandclinic.org/health/diseases/22077-apert-syndrome
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If you have any other resources pertaining to Apert Syndrome please feel free to leave yourself or another page in the comments.
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✨Limb Difference Spotlight✨
Syndactyly

“Syndactyly is the medical term for webbed or conjoined fingers or toes. It’s one of the most common congenital differences that affects hands and feet. Syndactyly occurs in about one in every 2,000-3,000 children born each year with up to 50% of cases being bilateral.
Syndactyly is described as simple or complex. Simple syndactyly means that the fingers are joined by skin and soft tissue only. Complex syndactyly means that the underlying bones are also joined together. Complicated syndactyly means that there are extra bones, and the tendons and ligaments have developed abnormally. Syndactyly can be treated with surgery to separate the joined fingers for functional purposes. Typically, children have this operation between 1 and 2 years old.”

✨RESOURCES✨

▫️Facebook-
🔎 Syndactyly, Polydactyly Ectrodactyly, Oligodactyly
and Symbrachdactyly UK
🔎 Syndactyly Family Support
🔎 Syndactyly
🔎 Syndactyly/Symbrachydactyly

▫️Instagram-





▫️Websites-
▪️ https://www.chop.edu/conditions-diseases/syndactyly
▪️ https://www.childrenshospital.org/conditions/syndactyly #:~:text=What%20is%20syndactyly%3F,toes%2C%20but%20not%20as%20often.
▪️ https://my.clevelandclinic.org/health/diseases/23521-syndactyly-webbed-digits
▪️https://www.ncbi.nlm.nih.gov/books/NBK557704/
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If you have any other resources pertaining to Syndactyly please feel free to leave yourself or another page in the comments.
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✨Limb Difference Spotlight✨
Femoral Anteversion

“Femoral anteversion is a condition where the femur (thigh bone) twists inward. The inward twisting of the femur causes the knees and feet to turn inward. Femoral anteversion occurs in approximately 10% of children, and the cause is unclear. Femoral anteversion often resolves on its own as the child grows and does not necessitate treatment. In more severe cases that do not self-correct by age 8 or 9 years old, treatment may involve bracing and special shoes aimed at correcting the foot position, or surgery to rotate the femur to a better position.”

✨RESOURCES✨

▫️Instagram-


▫️Websites-
▪️ https://www.childrenshospital.org/conditions/femoral-anteversion #:~:text=Femoral%20anteversion%20is%20an%20inward,is%20also%20called%20in%2Dtoeing.
▪️ https://www.chop.edu/conditions-diseases/femoral-anteversion
▪️ https://medical-dictionary.thefreedictionary.com/femoral+anteversion
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If you have any other resources pertaining to femoral anteversion please feel free to leave yourself or another page in the comments.
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✨Limb Difference Spotlight✨
Limb loss due to Sepsis

“Sepsis is a condition that occurs when the body’s response to an infection damages its own tissues and can lead to extensive inflammation, blood clotting, and organ failure. As sepsis worsens, sometimes nutrients cannot get to the tissues in the fingers, hands, arms, toes, feet, and legs. The body’s tissues begin to die and can cause gangrene. The dead tissue must be removed to prevent further infection. If the damage is extensive, amputation may be needed. Out of the approximate 185,000 amputations per year, around 13,870 are caused by sepsis.

On average, about 38 amputations a day are due to sepsis. Amputation is the loss or removal of a body part. The decision to amputate is based on making sure enough tissue is removed to ensure that all the damaged tissue is gone, and to preserve the patient’s independence and mobility as much as possible. Ideally, patients who have had an amputation will begin physiotherapy as soon as possible. Physiotherapy may include stretching and increasing muscle strength. Occupational therapists play an important role in helping amputees learn how to use special tools or adapt their living environment as needed. ”

✨RESOURCES✨

▫️Facebook-
🔎 “Sepsis Warriors”
🔎 “Sepsis Awareness, Septic Shock, survivors”
🔎”Post Sepsis Syndrome and LIVING Life After Surviving Sepsis”
🔎”Sepsis Survivors Society”

▫️Instagram-





us






▫️Websites-
▪️https://www.sepsis.org/sepsisand/amputations/
▪️https://www.mayoclinic.org/diseases-conditions/sepsis/symptoms-causes/syc-20351214
▪️https://my.clevelandclinic.org/health/diseases/12361-sepsis
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✨Limb Difference Spotlight✨
Posteromedial Tibial Bowing

\ pos· tero· me· di· al | \ päs-tə-rō-ˈmēd-ē əl :located on or near the dorsal midline of the body or a body part.
tib·​i·​al | \ ˈtib-ē-əl : of, relating to, or located near a tibia.

“Posteromedial Tibial Bowing is a congenital condition, impacting around 1 in 40,000, in which there is both posterior and medial bowing of the tibia and fibula. The foot assumes a calcaneovalgus position and is typically in extreme dorsiflexion. The foot at birth will occasionally be abutting the concave tibia and a skin dimple is often present over the apex of the bow. The bowing may partially correct on its own within the first 4 years of life. Although the tibia’s growth will be inhibited, treatment is always individualized to accommodate predicted height and the difference in limb lengths.”

✨RESOURCES✨

▫️Facebook-

🔎 “Posteromedial Tibial Bowing Support Group”

▫️Instagram-







▫️Websites-

▪️ https://posna.org/Physician-Education/Study-Guide/Posteromedial-Bowing-of-the-Tibia
▪️ https://www.limblength.org/conditions/posteromedial-tibial-bowing-pmtb/
▪️ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5902754/
▪️ https://paleyinstitute.org/blog/conditions/posteromedial-bowing-of-the-tibia/ #/
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If you have any other resources pertaining to Posteromedial Tibial Bowing please feel free to leave yourself or another page in the comments.
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✨Limb Difference Research Spotlight✨
“Functional Impact of Congenital Hand Differences: Early Results From the Congenital Upper Limb Differences (CoULD) Registry”

Purpose - Evaluate the functional, emotional, and social impact of congenital upper limb differences prior to treatment.

Significance - Understanding these areas beyond physical function provides more complete perspective on patient’s function, quality of life and well-being related to their condition.

Methods - Between June 2014 to March 2016, 2 pediatric hospitals enrolled 586 patients in the CoULD Registry. Of those, 301 patients were included in the study. Two patient-reported outcome surveys were given (Pediatric Outcomes Data Collection Instrument - PODCI and the Patient-Reported Outcomes Measurement Information System - PROMIS).

Results - Ultimately, children and adolescents with upper limb differences showed more positive emotional states and peer relationships compared to their peers, in addition to good mobility and overall function, despite reduced upper extremity function.

✨RESOURCES✨

▫️Authors-
📝Donald S. Bae, MD; Maria F. Canizares, MD; Patricia E. Miller, MS; Peter M. Waters, MD; Charles A. Goldfarb, MD

▫️Websites-
▪️ https://www.jhandsurg.org/article/S0363-5023(16)31066-8/fulltext
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✨Limb Difference Spotlight✨
Tibial Torsion
tib·​i·​al | \ ˈtib-ē-əl : of, relating to, or located near a tibia. \ tor·​sion | \ ˈtȯr-shən : the twisting of a bodily organ or part on its own axis.
There are two types of tibial torsion: internal & external. Whether the toes point inward (intoeing) or outward (outtoeing), tibial torsion is a common cause of gait (manner of walking) differences. Other conditions that can cause intoeing include:
• femoral anteversion, the inward twisting of the thigh bone (femur)
• metatarsus adductus, a foot deformity that causes the front half of the foot to turn inward.
Almost all children with internal tibial torsion improve without treatment, usually by the time they turn 4.
Although tibial torsion is a limb difference that you’re born with, it is often unnoticeable until a child starts to walk. For many kids, one leg twists more noticeably than the other.

✨RESOURCES✨

▫️Facebook-
🔎 “Clubfoot support”

▫️Instagram-
▪️
▪️ .beaute__

▫️Websites-
▪️ https://www.merriam-webster.com/medical/tibial
▪️ https://www.merriam-webster.com/dictionary/torsion
▪️ https://emedicine.medscape.com/article/1251352-overview
▪️ https://www.chop.edu/conditions-diseases/tibial-torsion
▪️ https://www.childrenshospital.org/conditions/tibial-torsion
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If you have any other resources pertaining to Tibial Torsion please feel free to leave yourself or another page in the comments.
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✨Limb Difference Spotlight✨

Ulnar longitudinal deficiency, previously known as ulnar club hand, is a condition in which the wrist is in a fixed and bent position toward the side of the hand with the little finger. This condition is also sometimes called ulnar dysplasia. It happens when 1 of the long bones of the forearm, the ulna, and other soft tissues of the hand, develop differently in the womb. The fingers and thumb may also be affected. Other muscles and nerves in the hand may be unbalanced or missing.
There can be other correlations within musculoskeletal system, such as scoliosis.
Ulnar longitudinal deficiency affects about 1 in 100,000 babies.
Infants with ulnar longitudinal deficiency can wear a splint and be treated with gentle stretching exercises to help their wrist and elbow move into a normal position and recover some range of motion. Some types of ulnar longitudinal deficiency can also be treated with surgery to improve hand and arm function. 

✨RESOURCES✨

▫️Facebook-
🔎 “Congenital Hand and Arm Differences”
🔎 “Lucky Fin Project”

▫️Instagram-




▫️Websites-
▪️https://www.childrenshospital.org/sites/default/files/media_migration/b92321c9-b748-42ec-80fc-59af050f763b.pdf
▪️ https://www.stanfordchildrens.org/en/service/hand-upper-limb-surgery/ulnar-longitudinal-deficiency?
▪️ https://www.connecticutchildrens.org/health-library/en/parents/ulnar-dysplasia/
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If you have any other resources pertaining to Ulnar Longitudinal Deficiency please feel free to leave yourself or another page in the comments.
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✨Limb Difference Spotlight✨

Phocomelia is a rare birth difference that can affect the upper and/or lower limbs. The bones of the affected limb are either missing or underdeveloped. The limb is shortened and in some cases, the hand or foot may be attached directly to the trunk. Phocomelia can be responsible for the absence of pelvic and thigh bones. Fingers and toes may also be fused together.
If all four limbs are absent, it’s called tetraphocomelia. “Tetra” means four, “phoco” means seal, and “melos” means limb. This term refers to the ways the hands and feet look. The hands may be attached to the shoulders, while the feet may be attached to the pelvis.
If desired, upper and lower extremity prosthetics are available for as early as six months of age.

✨RESOURCES✨

▫️Facebook-
🔎 “Lucky Fin Project”
🔎 “https://www.facebook.com/amazinginioluwa”

▫️Instagram-

bradenberger

▫️Websites-
▪️ https://rarediseases.org/gard-rare-disease/phocomelia/
▪️ https://www.stlouischildrens.org/conditions-treatments/phocomelia
▪️ https://www.tgh.org/institutes-and-services/conditions/phocomelia
▪️ https://www.healthline.com/health/phocomelia
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If you have any other resources pertaining to Phocomelia please feel free to leave yourself or another page in the comments.
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✨Limb Difference Spotlight✨

Congenital amputation is a condition where a person is born without a limb or portion of a limb. About 1 in 2,000 babies are born with congenital amputation each year.
The condition is often caused by amniotic band syndrome, which occurs when a free floating piece of amniotic sac tissue becomes entangled with a baby’s developing limb, cutting-off the blood supply and halting development. Amnion ruptures, a condition where the internal amniotic sac becomes separated from the outer portion, contributes to free-floating tissues. However, the exact causes of most cases cannot be exactly pinpointed.
Although congenital amputation does not usually hinder a person’s ability to adapt some people might consider prosthetics as a personal decision.

✨RESOURCES✨

▫️Facebook-

“The War Amps” (don’t let the name confuse you it is for children also!)
- https://www.facebook.com/TheWarAmps/
“Amputee Coalition”
- https://www.facebook.com/AmputeeCoalition/

▫️Instagram-



and.littlefish






▫️Websites-

▫️https://globalgenes.org/disease/congenital-amputation/
▫️https://www.amputee-coalition.org/resources/amputations-in-childhood/
▫️https://www.merriam-webster.com/dictionary/congenital%20amputation

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If you have any other resources pertaining to Congenital Amputation a please feel free to leave yourself or another page in the comments. 👇
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