A brainstorming session of affected people and relatives
Vascular anomalies affect the whole person. A comprehensive definition of health, encompassing not only physical health but also mental and social health, is the basis for an analysis of the disease from the perspective of those affected and their relatives. The problem areas defined in this context are summarized below in bullet points.
Typical physical problem areas
The following physical functional impairments or abnormalities are mentioned particularly frequently:
- Capillary malformation (port wine stains)
- Growth disorders (differences in circumference and length of extremities, disproportional growth in height)
- Pain at rest and during exercise
- Hemorrhages, external
- Hemorrhages, internal
- Dilated, often visible vessels, already common in childhood, mostly as varicose formations
- Thrombophlebitis
- Soft tissue swelling
- Feeling of heaviness and pressure
- Overheating or warmness of the affected areas
- Recurring complaints
Other problems commonly mentioned in the physical area include:
- Increasing pain during heat
- Stress, long periods of standing or sitting
- Tension of the skin
- Burning
- Discomfort in the affected leg
- Venous inflammation
- AV fistulas
- Aneurysms
- Recurrent erysipelas
- Pregnancy may increase symptoms through to high-risk pregnancy
- Angiokeratomas
- Increased surgical risk
- Special measures become necessary in other areas of health, e.g., individual anesthesia techniques that are uncomfortable
- Increased risk of injury
- Thromboses
- Embolism
Side effects or concomitant diseases are also frequently mentioned:
- Consequential damage due to missing treatments, too late or wrong therapies
- Consequential damage due to postural deformity e.g., pes equinus
- Limping
- Different foot/shoe sizes on both sides
- Deformities of the skeletal apparatus, e.g., scoliosis
- Incorrect position of the hip
- Premature joint ankyloses (e.g., angiodysplastic arthropathy)
- Functional limitations in affected areas
- Loss of function of body parts or organs
- Amputations
- Scars
- Cardiac arrhythmias
- Functional limitations in affected areas
- Occurrence of serious complications
- Wound healing disorders after injuries or operations
- Ulcus cruris (open leg wounds)
- Lack of resilience
- Muscular atrophy
- Lack of sleep due to pain
- High dosage of painkillers, pain therapy
- Lack of ability to recognize pain in other parts of the body as a warning signal
Typical mental problem areas
The mind is also significantly affected by the disease, resulting in psychological problem areas, which are mentioned below.
Personality fields:
- Feeling of powerlessness
- Dependency
- Feelings of shame
- Shyness
- Feelings of guilt
- Feeling overburdened by the sudden new situation or living everyday life with it
- Permanent stress
- Hopes are lost again and again, have to be rebuilt
- Withdrawal
- Depression
- Anger
- Feelings of inferiority
- Mistrust and/or difficulties in building trust
- Question and fear about the heritability of the disease
- Problems in perceiving the “I” with self-confidence and in treating yourself considerately
- Enduring being different
- Enduring being constantly looked at or even gawked at
- Being talked to about the disease, e.g., “What is it? Can’t anything be done about it? Is it skin cancer?”
- Having fingers pointed fingers at you and being laughed at, sometimes small children are frightened by the visible disease signs and start crying.
- Being insulted, e.g., in the disco: “can’t you go home, I want to have fun and not see a face like yours”.
- Putting up with being overlooked or ostracized
Dealing with and coping with the disease:
- Uncertainty in making decisions about diagnosis and treatment
- Uncertainty in dealing with the consequences and accompanying symptoms: therapies, bleeding, pain, anger, withdrawal, school refusal, puberty issues
- Refusal of medical treatment, especially during puberty
- Therapy fatigue, enduring waiting times for specialist and surgical appointments
- Difficult time of transition from pediatric to adult medicine
- Enduring, despite not getting answers/feedback on results despite commitment
- Physician contacts sometimes disappointing in course and outcome
- Constant consideration and putting your own needs aside
- Balancing the different needs within the family
- Finding words for your own illness so that you can react in everyday life
Worries and fears:
- Not having enough strength to live with the disease, to endure it
- Not being able to help or not being able to help enough
- About the future
- About embolisms
- About pain
- About surgery
- Inevitable decisions about doctors or therapies
- Can I/we balance the different needs within the family or relationship?
- Can my partner / can we do this?
Typical social problem areas
Experiencing the community with other non-affected people is also influenced by the disease and is described below.
Social contact:
- Shyness
- Withdrawal
- Loneliness
- Halo effect: frequent classification by others as inferior, less competent, less capable, less assertive
- Lack of accessibility severely restricts leisure activities
Finances:
- Less income due to job restrictions
- Additional costs in everyday life due to medical expenses
- In the event of a reduction in earning capacity or necessary early retirement, there is the threat of age-related poverty, as years of employment have been missed
- No financial reserves, e.g., for old age, for special purchases, for additional services from health insurers
Health insurance:
Organizational and financial efforts for cost compensation with health insurance companies or social benefit agencies
Lower insurance coverage: no occupational disability insurance, no daily hospital allowance, no acceptance in a health insurance plan at all
Typical occupational problem areas
The illness also has an impact on everyday school and work life.
School:
- Absenteeism
- Repetition of the school year
- Integration into the class sometimes difficult
- Difficulties in concentration due to pain or other complaints
- Unprepared teachers, students, colleagues
- Medical care on class trips, no competent doctors on site
Work:
- Longer periods of inability to work
- Restricted choice of occupation
- Difficulties in concentration due to pain or other complaints
- Prolonged incapacity to work may result in termination of employment
- Fewer opportunities for advancement/promotion
- Less competence and assertiveness is presumed
- Lower income due to the various limitations in the job
- Status as severely disabled has advantages and disadvantages when applying for jobs (protection against dismissal, depending on country, deters some employers).
