NMMS stands for Nonne-Milroy-Meige Syndrome. Nonne -Milroy-Meige syndrome is a hereditary disease. This means that Nonne-Milroy-Meige syndrome is present from birth. As part of the disease, the affected patients primarily suffer from lymphedema. As a result, various malformations form. In addition, in some cases, the lymphedema leads to the development of the affected person being disturbed.
What is Nonne-Milroy-Meige Syndrome?
Nonne-Milroy-Meige syndrome is named after the people who first described the condition. These are Max Nonne, a neurological specialist from Germany, William Milroy, an internist from the United States, and finally Henry Meige, a specialist in internal medicine from France. See AbbreviationFinder for abbreviations related to NMMS.
In some cases, Nonne-Milroy-Meige syndrome is also referred to by the synonymous terms Trophoedema hereditarium, hereditary chronic edema or pseudoedematous hypodermic hypertrophy. In English, the disease is mainly known under the name tropholymphoedema. However, some medical professionals and researchers consider the term Nonne-Milroy-Meige syndrome to be outdated and superfluous.
It is assumed that Nonne-Milroy-Meige syndrome is not an independent diagnosis. Because the clinical picture of the Nonne-Milroy-Meige syndrome is not uniform in many cases, so that the existence of a definable syndrome is doubted by some. Instead, the critics of the disease name advocate counting the Nonne-Milroy-Meige syndrome and its symptoms among the lymphedema that have a hereditary component.
For this reason, the current scientific literature has divided it into two forms of Nonne-Milroy-Meige syndrome. Type 1 is the so-called Nun-Milroy syndrome. The associated symptoms, especially the lymphedema characteristic of the disease, appear before the patients reach the age of 35. As a rule, there are no malformations that are typical for type 2.
Type 2 is also called Meige syndrome. The typical symptoms develop only after the 35th birthday of the affected person. Here, too, hereditary lymphedema is in the foreground. However, with this type, numerous malformations are added to the usual complaints.
Causes
No reliable statements can be made about the exact causes of the development of the Nonne-Milroy-Meige syndrome. Basically, it is a predominantly hereditary disease, i.e. a form of hereditary disease. This means that the affected patients suffer from the disease from birth. Depending on the type of Nonne-Milroy-Meige syndrome, the symptoms develop in childhood or in adults. There is probably a genetic defect that leads to the development of the disease.
Symptoms, Ailments & Signs
Basically, the Nonne-Milroy-Meige syndrome is accompanied by a number of different complaints and symptoms. The main symptom of the disease is lymphedema, which takes on various forms. In principle, the edema occurs in multiples. In the majority of cases, they occur on the limbs of the sick person.
In addition, patients may suffer from other deformities or ailments. Here, for example, a mental disability or a reduction in intelligence as well as short stature are possible. Some people suffer from a deformed spine and are hard of hearing.
Obesity, various ulcerations of a trophic nature and acromicria also sometimes occur. Some people suffering from Nonne-Milroy-Meige syndrome suffer from elephantiasis, which is associated with pronounced edema in the ankle area. Finally, malformations of the heart or the circulatory system are also possible.
Diagnosis & course of disease
The diagnosis of Nonne-Milroy-Meige syndrome is based on the clinical symptoms, which vary more or less depending on the patient. In principle, a doctor’s consultation is indicated if characteristic symptoms of the disease occur. The patient first consults his family doctor or a suitable specialist.
The disease is diagnosed step by step, with the discussion with the patient or the anamnesis being the top priority. The sick person informs the treating doctor about all complaints as well as their lifestyle, past illnesses and medications taken. In this way, it may already be possible for the doctor to make a suspected diagnosis.
Since Nonne-Milroy-Meige syndrome is a hereditary disease, the family history must be taken particularly carefully. After the anamnesis has been dealt with, clinical examination methods are used. The doctor examines the lymphedema and carries out numerous blood analyses. In this way, decisive information is collected that ultimately leads to the diagnosis.
Complications
Due to Nonne-Milroy-Meige Syndrome, patients suffer from a number of different malformations and deformities. Furthermore, the development of the child is significantly delayed, so that those affected suffer from mental retardation and are usually dependent on the help of other people in their everyday life.
The patient’s quality of life is significantly restricted and reduced by the Nonne-Milroy-Meige syndrome. Furthermore, the patients also suffer from short stature and also from hearing impairment. It can also cause problems in the spine, so that the patients suffer from restricted mobility. Obesity can also occur with this syndrome. Due to the malformations, the heart is also affected in many cases, so that the patients suffer from circulatory problems and can possibly die of cardiac death.
Furthermore, the parents of the child and the relatives are also affected by the Nonne-Milroy-Meige syndrome. They suffer from psychological problems and depression. Unfortunately, it is not possible to treat Nonne-Milroy-Meige syndrome. For this reason, the treatment is aimed exclusively at the respective symptoms. The life expectancy of the patient may also be restricted and reduced.
When should you go to the doctor?
When ulcers, obesity, or infection develop, Nonne-Milroy-Meige syndrome may be the underlying cause. A doctor’s visit is necessary if the symptoms do not go away on their own or get progressively worse. Symptoms that cannot be traced back to a specific cause must always be examined by a doctor. People who lead unhealthy lifestyles or drink alcohol regularly are particularly at risk. People with skin diseases or other diseases that can be traced back to the immune system or the hormonal balance are also among the risk groups and should see a doctor immediately if skin problems or other physical changes are noticed.
In addition to the family doctor, if you suspect Nonne-Milroy-Meige syndrome, you can also go to an internist. Depending on the nature of the symptoms, the dermatologist, a gastroenterologist or a doctor for hormonal diseases is responsible. Due to the large number of symptoms that usually occur with the chronic condition, several doctors are usually involved in the treatment. Due to the high risk of complications, close consultation with the specialist must be maintained during therapy.
Treatment & Therapy
At the present time there is still no possibility for the causal treatment of Nonne-Milroy-Meige syndrome. For this reason, the therapy and alleviation of the existing symptoms is the focus of therapeutic efforts. Lymphatic drainage is primarily used.
This drainage should be carried out regularly and relieves the discomfort that causes the edema. Other therapeutic measures are similar to those that are generally considered for lymphedema, even if they do not occur in connection with Nonne-Milroy-Meige syndrome. For example, patients are encouraged to follow a healthy lifestyle and reduce excess weight.
Outlook & Forecast
The course of the disease in Nonne-Milroy-Meige syndrome is unfavorable. A recovery can be ruled out with such a health disorder. According to the current status, the legal requirements do not allow scientists to change the genetics of the patient. Therefore, the cause of the syndrome cannot be treated.
The doctor treating you concentrates on the individually strong symptoms and draws up a treatment plan. The affected person must face lifelong health care so that changes or abnormalities can be reacted to as quickly as possible. Regular check-ups are fundamentally necessary so that the symptoms can be alleviated.
Due to medical advances, doctors are always able to develop new therapy methods that contribute to an improvement in the overall situation. Nevertheless, the disease represents an immense burden for the patient and their relatives in coping with everyday life. Often, the circumstances lead to the development of a mental illness to which all those affected are exposed to a long-term situation of overload. This possible development must be taken into account when making the forecast. In severe cases, the affected person’s cardiovascular system is also damaged from birth. The risk of reduced quality of life is therefore increased in these patients. They can develop a life-threatening situation at any time.
Prevention
So far, it is not possible to prevent Nonne-Milroy-Meige syndrome. The disease is present from birth, which is why preventive measures are obsolete. Effective therapy methods make everyday life easier for patients with lymphedema.
Aftercare
In most cases, those affected with Nonne-Milroy-Meige syndrome have only a few or even no special aftercare measures available. Since this is a hereditary disease, it can usually not be completely cured, so the affected person should consult a doctor at an early stage. In the case of a desire to have children, a genetic examination and counseling can also be useful in order to prevent the recurrence of this disease.
The disease is treated with the help of various therapies, whereby those affected can also carry out many of the exercises independently at home. In general, a healthy lifestyle has a positive effect on the course of Nonne-Milroy-Meige syndrome. Ideally, those affected should avoid being overweight and eat a healthy and balanced diet.
Furthermore, regular check-ups and examinations by a doctor are very important in order to alleviate the symptoms and also to detect other damage at an early stage. Many patients are dependent on psychological support from their own family, with loving and intensive conversations having a positive effect on the further course of the disease and also preventing depression or other mental upsets.
You can do that yourself
Unfortunately, since there are currently no treatment options, the only thing that remains is to alleviate the symptoms and make everyday life easier.
It is generally helpful to have regular lymphatic drainage carried out in order to relieve oedema-related symptoms such as feelings of tension and pain. Due to the variety of possible symptoms, there are hardly any general recommendations. What is certain is that one should urgently try to avoid obesity and not unnecessarily burden the cardiovascular system. For this purpose, a healthy lifestyle and a balanced diet are advisable, as well as physical activity as far as possible.
In particular, relatives of very young patients often suffer from self-doubt to the point of depression, which is why visiting self-help groups and also a psychologist helps to regain the necessary stability in everyday life. Sometimes it is also recognized in such discussions that the family is unable to cope with the care and that home care is recommended.
By applying for a severely disabled person’s pass, the person concerned can take advantage of the help of the integration specialist office and receive help there for self-help, as well as help in work, care and official matters. This is a great relief, especially in the initial period after the diagnosis, and shows possibilities that were not previously considered. Relatives of sick children also receive urgently needed help for the newly arranged everyday life.