Your role as a grandparent is very important — both in terms of supporting your daughter but also encouraging your grandson. The condition known as Navajo Familial Neurogenic Arthropathy is uncommon so finding a physician to follow him who is familiar with the condition and appropriate treatment will be important.
Neurogenic refers to the loss of sensation to deep pain. Without that protective response, the child can develop joint deformities and problems with limb alignment (especially in the legs). Arthropathy is another term to mean joint disease.
The symptoms are similar from case to case. Bone fractures, joint destruction, and progressive deformities of the arms, legs, and spine are common and need the attention of an orthopedic surgeon. Although the focus is on the orthopedic (bone and joint) problems faced by these children, there are other problems. Anhidrosis (inability to sweat) is one of those problems. These children can’t tolerate high temperatures.
Each child is treated according to his or her injuries or deformities but the results are often disappointing. Surgeons have learned to limit the amount of surgery done as a treatment measure and to rely more heavily on conservative (nonoperative) care.
It will be helpful for the family to have the following recommendations:
Fortunately, this is a rare problem. Affected individuals have normal intelligence, which may help them recognize the need for medical intervention and follow-up. Keeping in close contact with the orthopedic surgeon can help patients avoid serious complications that can contribute to loss of function and progressive disability.