“Helen Keller was an author, lecturer, and crusader for the handicapped.  Widely honored throughout the world and invited to the White House by every U.S. president from Grover Cleveland to Lyndon B. Johnson, Keller altered the world’s perception of the capacities of the handicapped. More than any act in her long life, her courage, intelligence, and dedication combined to make her a symbol of the triumph of the human spirit over adversity.  She went on to acquire an excellent education and to become an important influence on the treatment of the blind and deaf who as a baby younger than 2 years old was diagnosed deaf and blind!”.

History (https://www.history.com/topics/womens-history/helen-keller)

Orientation and Mobility

In addition, the child who is deaf-blind will need help learning to move about in the world. Without vision, or with reduced vision, he or she will not only have difficulty navigating, but may also lack the motivation to move outward in the first place. Helping a young child who is deaf-blind learn to move may begin with thoughtful attention to the physical space around him or her (crib or other space) so that whatever movements the child instinctively makes are rewarded with interesting stimulation that motivates further movement. Orientation and mobility specialists can help parents and teachers to construct safe and motivating spaces for the young child who is deaf-blind. In many instances children who are deaf-blind may also have additional physical and health problems that limit their ability to move about. Parents and teachers may need to include physical and occupational therapists, vision teachers, health professionals, and orientation and mobility specialists on the team to plan accessible and motivating spaces for these children. Older children or adults who have lost vision can also use help from trained specialists in order to achieve as much confidence and independence as possible in moving about in their world.

Individualized Education

Education for a child or youth with deaf-blindness needs to be highly individualized; the limited channels available for learning necessitate organizing a program for each child that will address the child’s unique ways of learning and his or her own interests. Assessment is crucial at every step of the way. Sensory deficits can easily mislead even experienced educators into underestimating (or occasionally overestimating) intelligence and constructing inappropriate programs.

Helen Keller said, “Blindness separates a person from things, but deafness separates him from people.” This potential isolation is one important reason why it is necessary to engage the services of persons familiar with the combination of both blindness and deafness when planning an educational program for a child who is deaf-blind. Doing so will help a child or youth with these disabilities receive an education which maximizes her or his potential for learning and for meaningful contact with her or his environment. The earlier these services can be obtained, the better for the child.

Transition

When a person who is deaf-blind nears the end of his or her school-based education, transition and rehabilitation help will be required to assist in planning so that as an adult the individual can find suitable work and living situations. Because of the diversity of needs, such services for a person who is deaf-blind can rarely be provided by a single person or agency; careful and respectful teamwork is required among specialists and agencies concerned with such things as housing, vocational and rehabilitation needs, deafness, blindness, orientation and mobility, medical needs, and mental health.

The adult who is deaf-blind must be central to the transition planning. The individual’s own goals, directions, interests, and abilities must guide the planning at every step of the way. Skilled interpreters, family members and friends who know the person well can help the adult who is deaf-blind have the most important voice in planning his or her own future.

Inclusion in Family

Clearly, the challenges for parents, teachers and caregivers of children who are deaf-blind are many. Not least among them is the challenge of including the child in the flow of family and community life. Since such a child does not necessarily respond to care in the ways we might expect, parents will be particularly challenged in their efforts to include her or him. The mother or father of an infant who can see is usually rewarded with smiles and lively eye contact from the child. The parent of a child who is deaf-blind must look for more subtle rewards: small hand or body movements, for instance, may be the child’s way of expressing pleasure or connection. Parents may also need to change their perceptions regarding typical developmental milestones. They can learn, as many have, to rejoice as fully in the ability of their child who is deaf-blind to sign a new word, or to feed herself, or to return a greeting as they do over another child’s college scholarship or success in basketball or election to class office.

Parents, then, may need to shift expectations and perceptions in significant ways. They also need to do the natural grieving that accompanies the birth of a child who is disabled. Teachers and caregivers must also make these perceptual shifts. Parents’ groups and resources for teachers can provide much-needed support for those who live and work with children and adults who are deaf-blind. Such supports will help foster the mutually rewarding inclusion of children who are deaf-blind into their families and communities. (See section below for resources.)

Summary

Though deaf-blindness presents many unique challenges to both those who have visual and hearing impairments and to their caregivers and friends, these challenges are by no means insurmountable. Many persons who are deaf-blind have achieved a quality of life that is excellent. The persons who are deaf-blind who have high quality lives have several things in common.

First, they have each, in their own way, come to accept themselves as individuals who have unique experiences of the world, and valuable gifts to share. This fundamental acceptance of self can occur regardless of the severity of the particular sensory losses or other challenges that a person has. Second, they have had educational experiences which have helped them maximize their abilities to communicate and to function productively. Finally, these happy, involved persons who are deaf-blind live in families, communities, or social groups that have an attitude of welcoming acceptance. They have friends, relatives, and co-workers who value their presence as individuals with significant contributions to make to the world around them. For these persons with limited sight and hearing, and for those near them, deaf-blindness fosters opportunities for learning and mutual enrichment.

“Undeterred by deafness and blindness, Helen Keller rose to become a major 20^th century humanitarian, educator and writer. She advocated for the blind and for women’s suffrage and co-founded the American Civil Liberties Union.  Before Helen’s second birthday, a serious illness—possibly meningitis or scarlet fever—left her deaf and blind. She had no formal education until age seven, and since she could not speak, she developed a system for communicating with her family by feeling their facial expressions. Recognizing her daughter’s intelligence, Keller’s mother sought help from experts including inventor Alexander Graham Bell, who had become involved with deaf children. Ultimately, she was referred to Anne Sullivan, a graduate of the Perkins School for the Blind, who became Keller’s lifelong teacher and mentor.

Sullivan married Harvard instructor and social critic John Macy in 1905, and Keller lived with them. During that time, Keller’s political awareness heightened. She supported the suffrage movement, embraced socialism, advocated for the blind and became a pacifist during World War I. Keller’s life story was featured in the 1919 film, Deliverance. In 1920, she joined Jane Addams, Crystal Eastman, and other social activists in founding the American Civil Liberties Union; four years later she became affiliated with the new American Foundation for the Blind in 1924.

After Sullivan’s death in 1936, Keller continued to lecture internationally with the support of other aides, and she became one of the world’s most-admired women (though her advocacy of socialism brought her some critics domestically). During World War II, she toured military hospitals bringing comfort to soldiers.

A second film on her life won the Academy Award in 1955; The Miracle Worker.”

National Women’s History Museum (https://www.womenshistory.org/education-resources/biographies/helen-keller)

Today, many children who are born deaf or blind have access to amazing support to help them navigate the world. Similarly, those who suffer loss of hearing or sight later in life have numerous resources to help them overcome communication barriers introduced by their new reality. It’s unlikely that those in this situation would be cut off completely from communicating with others. In the 1880s, Helen Keller wasn’t so fortunate. Despite all of the barriers that she faced because of her deafness, her blindness and her gender, she was able to do impressive work with Anne Sullivan to move care of the deaf-blind population forward

Those unfortunately born with no sight and hearing face many challenges.

It may seem that deaf-blindness refers to a total inability to see or hear. However, in reality deaf-blindness is a condition in which the combination of hearing and visual losses in children cause “such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness” ( 34 CFR 300.8 ( c ) ( 2 ), 2006) or multiple disabilities. Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches in order to ensure that children with this disability have the opportunity to reach their full potential.

A person who is deaf-blind has a unique experience of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is deaf-blind, the world is initially much narrower. If the child is profoundly deaf and totally blind, his or her experience of the world extends only as far as the fingertips can reach. Such children are effectively alone if no one is touching them. Their concepts of the world depend upon what or whom they have had the opportunity to physically contact.

If a child who is deaf-blind has some usable vision and/or hearing, as many do, her or his world will be enlarged. Many children called deaf-blind have enough vision to be able to move about in their environments, recognize familiar people, see sign language at close distances, and perhaps read large print. Others have sufficient hearing to recognize familiar sounds, understand some speech, or develop speech themselves. The range of sensory impairments included in the term “deaf-blindness” is great.

As far as it has been possible to count them, there are over 10,000 children (ages birth to 22 years) in the United States who have been classified as deaf-blind (NCDB, 2008). It has been estimated that the adult deaf-blind population numbers 35-40,000 (Watson, 1993). The causes of deaf-blindness are many. Below is a list of many of the possible etiologies of deaf-blindness.

Major Causes of Deaf-Blindness
Syndromes-Like Down Syndrome, Trisomy13 Syndrome & Usher

Multiple Congenital Anomalies- Like CHARGE Association, Fetal alcohol syndrome, Hydrocephaly, Maternal drug abuse and Microcephaly.

Prematurity=Congenital Prenatal Dysfunction.  Like AIDS, Herpes, Rubella, Syphilis and Toxoplasmosis.

Post-natal Causes- Like Asphyxia, Encephalitis, Head injury/trauma, Meningitis and Stroke.

The one major CHALLENGE these patients face:

Communication

The disability of deaf-blindness presents unique challenges to families, teachers, and caregivers, who must make sure that the person who is deaf-blind has access to the world beyond the limited reach of his or her eyes, ears, and fingertips. The people in the environment of children or adults who are deaf-blind must seek to include them—moment-by-moment—in the flow of life and in the physical environments that surround them. If they do not, the child will be isolated and will not have the opportunity to grow and to learn. If they do, the child will be afforded the opportunity to develop to his or her fullest potential.

The most important challenge for parents, caregivers, and teachers is to communicate meaningfully with the child who is deaf-blind. Continual good communication will help foster his or her healthy development. Communication involves much more than mere language. Good communication can best be thought of as conversation. Conversations employ body language and gestures, as well as both signed and spoken words. A conversation with a child who is deaf-blind can begin with a partner who simply notices what the child is paying attention to at the moment and finds a way to let the child know that his or her interest is shared.

This shared interest, once established, can become a topic around which a conversation can be built. Mutual conversational topics are typically established between a parent and a sighted or hearing child by making eye contact and by gestures such as pointing or nodding, or by exchanges of sounds and facial expressions. Lacking significant amounts of sight and hearing, children who are deaf-blind will often need touch in order for them to be sure that their partner shares their focus of attention. The parent or teacher may, for example, touch an interesting object along with the child in a nondirective way. Or, the mother may imitate a child’s movements, allowing the child tactual access to that imitation, if necessary. (This is the tactual equivalent of the actions of a mother who instinctively imitates her child’s babbling sounds.) Establishing a mutual interest like this will open up the possibility for conversational interaction.

Teachers, parents, siblings, and peers can continue conversations with children who are deaf-blind by learning to pause after each turn in the interaction to allow time for response. These children frequently have very slow response times. Respecting the child’s own timing is crucial to establishing successful interactions. Pausing long enough to allow the child to take another turn in the interaction, then responding to that turn, pausing again, and so on—this back-and-forth exchange becomes a conversation. Such conversations, repeated consistently, build relationships and become the eventual basis for language learning.

As the child who is deaf-blind becomes comfortable interacting nonverbally with others, she or he becomes ready to receive some form of symbolic communication as part of those interactions. Often it is helpful to accompany the introduction of words (spoken or signed) with the use of simple gestures and/or objects which serve as symbols or representations for activities. Doing so may help a child develop the understanding that one thing can stand for another, and will also enable him or her to anticipate events.

Think of the many thousands of words and sentences that most children hear before they speak their own first words. A child who is deaf-blind needs comparable language stimulation, adjusted to his or her ability to receive and make sense of it. Parents, caregivers, and teachers face the challenge of providing an environment rich in language that is meaningful and accessible to the child who is deaf-blind. Only with such a rich language environment will the child have the opportunity to acquire language herself or himself. Those around the child can create a rich language environment by continually commenting on the child’s own experience using sign language, speech, or whatever symbol system is accessible to the child. These comments are best made during conversational interactions. A teacher or a parent may, for example, use gesture or sign language to name the object that he or she and the child are both touching, or name the movement that they share. This naming of objects and actions, done many, many times, may begin to give the child who is deaf-blind a similar opportunity afforded to the hearing child—that of making meaningful connections between words and the things for which they stand.

Principal communication systems for persons who are deaf-blind are these:

• touch cues
• gestures
• object symbols
• picture symbols
• sign language
• fingerspelling
• Signed English
• Pidgin Signed English
• braille writing and reading
• Tadoma method of speech reading
• American Sign Language
• large print writing and reading
• lip-reading speech

Along with nonverbal and verbal conversations, a child who is deaf-blind needs a reliable routine of meaningful activities, and some way or ways that this routine can be communicated to her or him. Touch cues, gestures, and use of object symbols are some typical ways in which to let a child who is deaf-blind know what is about to happen to her or him. Each time before the child is picked up, for example, the caregiver may gently lift his or her arms a bit, and then pause, giving the child time to ready herself or himself for being handled. Such consistency will help the child to feel secure and to begin to make the world predictable, thus allowing the child to develop expectations. Children and adults who are deaf-blind and are able to use symbolic communication may also be more reliant on predictable routine than people who are sighted and hearing. Predictable routine may help to ease the anxiety which is often caused by the lack of sensory information.

Stay tune for Part II tomorrow on other challenges.

“Although closely related, the treatment and prognosis varies greatly between actinic keratosis (AK), keratoacanthoma (KA), and other skin cancers; therefore, an accurate diagnosis is essential. Immunohistochemistry (IHC) has been explored as a possible means to differentiate between AK, KA, and others.”.

The Journal of the American Academy of Dermatology (https://www.jaad.org/article/S0190-9622(19)31299-X/fulltext).

“Get the facts about skin cancer, the most common cancer in the United States and worldwide.

• 1 in 5 Americans will develop skin cancer by the age of 70.
• More than 2 people die of skin cancer in the U.S. every hour.
• Having 5 or more sunburns doubles your risk for melanoma.
• When detected early, the 5-year survival rate for melanoma is 99 percent.“

There’s more than meets the eye when it comes to skin cancer, so make sure you know all the facts.

About 90 percent of nonmelanoma skin cancers are associated with exposure to ultraviolet (UV) radiation from the sun.

Actinic keratosis is the most common precancer; it affects more than 58 million Americans.  Squamous cell carcinoma (SCC) is the second most common form of skin cancer. An estimated 1.8 million cases of SCC are diagnosed in the U.S. each year. Regular daily use of an SPF 15 or higher sunscreen reduces the risk of developing squamous cell carcinoma by about 40 percent.  Incidence rates of Merkel cell carcinoma, a rare and aggressive form of skin cancer, increased by 95 percent from 2000 to 2013.

Ultraviolet (UV) radiation is a proven human carcinogen.  Indoor tanning devices can emit UV radiation in amounts 10 to 15 times higher than the sun at its peak intensity.

The annual cost of treating skin cancers in the U.S. is estimated at $8.1 billion: about $4.8 billion for nonmelanoma skin cancers and $3.3 billion for melanoma.”

Skin Cancer Foundation
(https://www.skincancer.org/skin-cancer-information/skin-cancer-facts/#general)

“With over 5 million cases diagnosed in the United States each year, skin cancer is America’s most common cancer. Fortunately, skin cancer is also one of the most preventable cancers. By sharing facts about the dangers of unprotected sun exposure and encouraging people to check their skin for warning signs, we can and will save lives.”.

Skin Cancer Foundation (https://www.skincancer.org/get-involved/skin-cancer-awareness-month/)

“Amyloidosis is a rare disease characterized by a buildup of abnormal amyloid deposits in the body. Amyloid deposits can build up in the heart, brain, kidneys, spleen and other parts of the body. A person may have amyloidosis in one organ or several.

John Hopkins Medicine (https://www.hopkinsmedicine.org/health/conditions-and-diseases/amyloidosis)

Diagnostic Tests for Amyloidosis:

*1. First your doctor would do a thorough medical exam with blood/urine tests searching for clues of high protein where it shouldn’t belong or certain liver or thyroid abnormal findings. The MD will follow with further diagnostic tooling especially if these findings show up in blood/urine tests. Common blood exams used are BNP (basic natriuretic peptide). BNP is a substance secreted from the ventricles or lower chambers of the heart in response to stress and changes in pressure that occur when heart failure develops and worsens. The level of BNP in the blood increases when heart failure symptoms worsen, and decreases when heart failure condition is stable. It is not so much elevated over the norm but more with this disease patients the MD will see where the BNP level was at last visit & compare.

Another blood test is troponin and this gets released into the bloodstream when your heart is affected by amyloids.

*2. Second your MD may want to further diagnose for this disease through getting a tissue biopsy where the MD’s intent is to check for signs indicating this is highly possible for amyloidosis. The biopsy could be taken from your abdominal fat, bone marrow, or an organ such as your liver or kidney. Tissue analysis can help determine the type of amyloid deposit.

*3. Imaging Tests. Images taken of the organs that are affected by amloidosis can help the MD establish the intensity or stage your disease is at. There are 2 most commonly imaging tests used and can diagnose the disease early. There is the echocardiogram test, sound wave imaging of the heart, that will be used to assess the size and functioning capability level of the heart. Another test is a MRI of the heart (magnetic residence imaging). Other imaging tests can evaluate the extent of amyloidosis in the liver or spleen.

When the heart chambers become filled with amyloids it thickens the walls of those chambers especially the lower chambers which can be picked up by the echocardiogram through the different angles of sound waves that go via the heart during this exam. Another thing that can be measured through the echocardiogram is your diagnostic function; that represents a measure of how stiff your heart is and how well is your heart actually functioning.

Another technique that can be used is strain imaging. This is also done through echocardiogram. This tells the doctor in more detail how much the muscle fibers in the heart are actually shortening and contracting. It measures certain parts of the heart in actually contracting and function. This is actually better in help diagnosing compared to just looking at ejection fraction, which is the amount of blood pumped out of the left ventricle chamber upon contraction of the heart (When he hear lub dub of the heart with a stethoscope that is the heart actually contracting. First the upper chamber on lub is contracting and on dub is the lower chambers contracting). This test is a specializing test and is not widely used but it is available in certain hospitals.

Ending line amyloidosis is a group of diseases in which one or more organ systems in the body accumulate abnormal proteins known as amyloid. The name amyloidosis was first used more than 150 years ago, but cases were described over 300 years ago. However, only in the past ¼ of a century have MD’s understood the specific make up and structure of amyloid proteins. Although amyloidosis is not a cancer but it is a serious condition. It is disabilitating and gets to life threatening. However, growing aware- ness of the condition seems to be leading to substantial new research and Rx alternatives.

There’s no cure unfortunately for amyloidosis. But treatments can help you manage your symptoms and limit the production of amyloid protein.

Treatment is usually aimed at eliminating the source of the abnormal precursor protein.

Primary amyloidosis (AL, amyloid light chain) is associated with a clonal plasma cell disease and the immunoglobulin light chains made by the abnormal plasma cells. AL also occurs in amyloidosis associated with multiple myeloma. Treatment involves chemotherapy or stem cell transplantation to eliminate the plasma cells (the source of the abnormal light chains).

Familial amyloidosis (AF) is associated with a genetic abnormality that can be inherited. AF causes the liver to make an abnormal form of a protein called transthyretin. The treatment for AF is liver transplantation.

Secondary amyloidosis (AA) is associated with inflammation and elevated levels of serum amyloid A caused by inflammation. Treatment involves elimination of the source of inflammation.

Through “The Amyloidosis Foundation” they provide over the world medical facilities/hospitals that major in this disease .

Hope this article has helped you in some way for yourself or family or friend in better understanding about the disease, knowing tests for it, and places majored with this unfortunate disease an expert can treat in a medical facility.

“Healthcare providers call amyloidosis a “protein misfolding disorder.  Healthcare providers typically diagnose amyloidosis in people ages 50 to 65. The diseases affect more men and people assigned male at birth than women and people assigned female at birth. Healthcare providers may do several different tests, but ultimately, they use bone marrow aspiration and bone marrow biopsy to identify the mutated protein causing specific amyloidosis types.  MD’s do other tests also. Healthcare providers treat amyloidosis by treating symptoms and organ damage and by treating the underlying cause.”.

Cleveland Clinic (https://my.clevelandclinic.org/health/diseases/23398-amyloidosis)