There are no more than two years ago, that Mans Rundqvist in the first place, by was about in the media.
Then, as now, he fought for his right to the medicine.
Gary is suffering from a rare disease, Duchenne muscular dystrophy (dmd), in order to break down his muscles, and for the past five years, put him in a wheelchair.
the Disease is progressive and the life expectancy of those affected is between 25 to 30 years of age.
Bromsmedicinen Translarna, which Gary had since he was five years old, and can not cure the disease, but in slowing down the progression of the disease, and making that Participated gets to keep the population a little bit longer.
Duchenne muscular dystrophy
Duchenne's muscular dystrophy (DMD) is caused by a deficiency of the protein dystrophin. The disease causes progressive muscle weakness and occurs almost exclusively in men and boys.
Each year, about 10 of the boys in Sweden are diagnosed with Duchenne muscular dystrophy (dmd). The total number of people living with the disease is not known, but the occurrence is estimated to be approximately 3 per 100 000 of the population.
Duchenne muscular dystrophy (dmd) is caused by mutations in the gene DMD, which controls the formation of (codes for) the protein dystrophin. The gene is on the X chromosome (Xp21.2), and is the largest gene in our dna.
In the case of Duchenne muscular dystrophy (dmd), one can get the symptoms of not only skeletal muscle but also in that of the heart, the gastro-intestinal tract and the central nervous system.
Source: the Swedish national Board of health.View the merVisa off
Initially, were Mans medicine as part of a pharmaceutical trial. Later, were subsidised by the county council.
in the year 2018 was decided, however, the Region Skåne, with the support of a recommendation made by the NT in the council will no longer pay for the drug for people who do not have the ability to walk or stand without assistance.
the average life expectancy of those affected is between 25 to 30 years of age.Photo by: < / b> in PRIVATE
Gary, who is in a wheelchair for the past five years, was not.
"a couple of weeks, I began to cough and clear your throat to me, and pretty soon, I was on a respirator at night," says Gary.
a Clear deterioration in
the Attending physician was able by way of control and regular follow-up during the summer and fall, and in 2018, the state is a signicant deterioration in respiratory function and muscular strength in the upper part of the body of a Mans.
the Decline became more apparent, and Gary was forced to use the ventilatory on a regular basis. His doctor sent in a request for financial support for the continuation of treatment with Translarna, which has led to a re-evaluation of the Läkemedelsrådet in the region.
Then, five years back, sitting in Gary, in a wheelchair.Photo by: < / b> Private
In november of 2018, the subsidies, and the drug was re-filed.
The date is the Mans and lung capacity, and adequate, and to his physician summarizing his lung volume and hostkraft is much better than what you would expect from a natural sjukdomsprogress in patients with Duchenne's.
" I was able to live a fairly normal life to this day. However, it is likely to be different, " says Gary.
I feel terrible. I know that I will get worse again,
In march of this year, Gary: a new message from the Region with the announcement that, once again, decided to draw up the medication, this time for good.
" It's a shame. I know that I will get worse again, " he said.
once again, being forced to Gary and his family and, therefore, to be contrary to law and medicine.
Appeal to you to think about
the Region of Skåne in the assessment of the counties of Halland and Västra Götaland where they are going on the Dental practice and the läkemedelsförmånsverkets a decision about who is going to get expensive bromsmedicinen maintained. You can no longer walk is not for the cost of the medication.
" there is medical evidence that Translarna will actually help to maintain other vital functions, they do not care about. While we do not Läkemedelsrådet, they say that the door is closed, said Gary's dad, Fredrik Rundqvist.
In an appeal for Skåne, the leading politicians of the type of the family, it is totally unacceptable that the Region, once again, exposes an individual to this discriminatory treatment.
According to Stefan Nilsson, president of the Läkemedelsrådet in the region, has decided to no longer subsidise the drug, Translarna, for non-walking patients, been made entirely on the basis of the scientific evidence.
" There's just not enough documentation that the medication is effective for non coffee. If you look at how the regulatory authorities around the world are discussed, there is no approved Translarna as the drug of the non-pedestrians. In the united states, have not been approved by the Translarna in general, " he said.
just As in the whole of Sweden
To be the year 2018 a temporary set up Translarna for the non-walking, and after removal of the medication, explains Stefan Nilsson, with the hope that the pharmaceutical company CONCERNED to submit a new study.
" We all make our decisions based on science and research. Presented new information to us, we will certainly look at it. This company has a responsibility to do just that, " he said.
This is just about the worst thing that you don't even have to respond to a sick boy
In Sweden, there are now four of the boys with Duchenne who are no longer able to walk. The two of them live in southern sweden, one in the Western Region, and one in hawaii.
" The other regions have reasoned in the same way that we do. It is very important that we are thinking alike here. You will be entitled to the same health care, regardless of where they live in Kiruna, sweden, or to Berlin, " says Stefan Nilsson.
Get the answers
Mans will never be able to get back the muscle he had lost, and life in a wheelchair, he has come to terms with. It is important to maintain good lung capacity, and even the movement of my arms – for as long as possible.
in a Mans life, is lived in front of the computer. This is where he does his homework, and hanging out with his friends. He will lose mobility in his arms, of his mask, and he will not be able to do that, " says Fredrik Rundqvist.
Gary has been withdrawn at the time the petition in order to draw attention to the situation.Photo by: < / b> Private
in Order to fight for their cause, have Participated myself drawn in time and time is a collection of statements of support, which at the time of writing 7570 signatures, as well as the recording of a movie in which he outlines his fears for the future, and that he had sent to the leaders of the region.
so Far, he has not received a response.
"It's just about the worst thing that you can't even respond to a sick boy," says Fredrik Rundqvist.
Gary, have medicine at home for a period of two months. Since the end of the year.
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