Customers' stories - Children congenital or inherited conditions

Maja Eriksson

IQoro® makes a difference for a chronically ill patient

Maja Eriksson, 22 years old, from Gävle in Sweden suffers from Myotonic Dystrophy, a chronic illness which in many ways is reminiscent of ALS (Amyotrophic Lateral Sclerosis - sometimes called Lou Gehrig's disease). After years of aching muscles, tiredness and periods of swallowing difficulties, Maja at last got a diagnosis.  In her fight to maintain her muscle strength the neuromuscular trainer IQoro® has made the difference in Maja’s everyday life.

We are meeting at the high school in Gävle, where Maja is studying to be a nurse,  a profession often associated with stress, regular heavy lifting and immense responsibility. Maja already knows that she won’t be able to manage some of the work situations that arise in a nurse’s daily life, but she is sure that she has a future within the profession.

The health service had no answer

Even as a child, Maja suffered from aching muscles, but her parents believed that it was just growing pains.

- I also had periods with heartburn and reflux, but because I have always been painfully thin my worried mother forced me to eat, which would often make me sick.

These so-called growing pains would later show themselves to be something completely different, but Maja was not diagnosed correctly until she reached adulthood. The older she got, the harder the muscle inflammation bit, sometimes in both legs at once.

Over the years there have been numerous doctors and physiotherapists and Maja has been subjected to long periods of pain and a lack of understanding. The disease is not visible from the outside – to start with at least – and the family fumbled in the dark for an explanation.

It was a dentist who opened the door

It was not until 2015 that Maja first got an accurate diagnosis, perhaps in a roundabout way, with the help of a dentist.

- I woke one morning, sat down to eat breakfast and discovered that I couldn’t swallow.

At the clinic, she was advised to drink water, but nothing helped. Finally, Maja was admitted to hospital and had a gastroscopy and was referred to a dentist, but also a researcher in the specialist area of orofacial medicine.

- I was asked to perform a whole battery of tests and the experts concluded that my lip musculature was badly weakened, which affected both my ability to swallow, as well as my speaking; which was indistinct. Other muscle groups were impaired as well, which meant that I had poor balance. Pretty frightening that I had not understood what bad shape I was in, says Maja ruefully.

A shocking diagnosis

After this visit, Maja was prescribed an IQoro® neuromuscular trainer along with its exercise regime as a  treatment for mechanical swallowing difficulties: three training sessions per day, preferably before mealtimes.

It was also via the clinic that Maja got the first indication that there could possibly be another underlying reason for her difficulties.

- The results of my neurological tests were poor, and the dentist underlined this in her referral to my doctor.

And sure enough, in January 2015 Maja was diagnosed with Myotonic Dystrophy type 1, which is in many ways similar to ALS.

- My father, who had always been a little poorly, thought at first that it was he who had passed it onto me, therefore it came as a shock when instead it was shown that it was my mother’s side that had transmitted this sickness.

Both my mother and my older sister carry the predisposition to this illness and now both have begun to exhibit the symptoms, but not to the same extent as I.

Sometimes there is something lacking in me

The explanation of Maja’s mother and sister not being as badly affected may be because the severity of the inherited disease increases successively.  Simply put, the sickness becomes more aggressive with each generation. It can also be affected by when you were born in relation to your siblings: Maja is the youngest of three sisters which led to her being hit hardest, the middle sister has avoided the condition completely.

How it must be, to be 22 years old, at the beginning of your adult life and know that the body’s muscles slowly but surely will break down. To know that muscle pain, brain tiredness and possible heart problems will be a part of your everyday life, is beyond imagining.

IQoro® has eased my everyday life

There is still no magic pill against Myotonic Dystrophy but, despite everything, Maja tries to look at the bright side of life. Hopefully there will one day be a breakthrough in research so that the disease can be treated or cured. Training with the neuromuscular exerciser IQoro® has also made a bigger difference than Maja had dared to hope.

- Nothing has helped before, but IQoro® has meant that I have recovered lost muscle strength and mobility. The treatment has also meant that I have recovered my ability to swallow and have less problem with reflux.

Her most recent appointment with the dentist confirmed her perceptions. All results were significantly improved.  Today Maja speaks more distinctly and her other musculature has improved, which has countered her earlier problems with balance.

- It’s fascinating to see that it’s possible to stimulate the muscles in the nerve pathways via the mouth. IQoro® can never cure my condition, but to regain strength and stamina and mobility are important to my everyday life, says Maja.

Despite the heavy baggage that she has to carry with her in her journey through life, Maja allows herself her dreams.

- In less than a year I should be a qualified nurse, and with my experience of illnesses and sicknesses I believe that I can contribute a lot to healthcare.  And even have my own children one day, or maybe adopt.

Matteus and Arion Hylander

Matteus - a contented 10 year old

Matteus and Arion Hylander, 10 years old, are twins, but not especially like each other. This is not only because they are non-identical twins, but because Matteus was born with Prader Willis Syndrome which makes circumstances for the two brothers look very different. However, Matteus’ life now looks fairly positive, partially because he has got help with oral training from the Speech- and Swallowing Centre at Hudiksvall hospital in northern Sweden.

For Annette Hylander her pregnancy was not without its complications. Apart from the fact it showed that she was carrying twins, they discovered a cyst in one of her ovaries that had to be surgically removed despite her ongoing pregnancy.

- It was a difficult time. There are risks with all operations and we weren’t certain either what sort of tumour we were talking about, says Mats Hylander who at the moment is taking parental leave to care for Matteus and his four siblings.

Mother, Annette is at her job as a cantor.

- The operation went well and it was good to be rid of the tumour.

The pregnancy proceeded, but a certain concern remained and hung in the air. One twin, Matteus, found himself some way under the ideal growth curve, whilst his brother Arion followed it closely.

- Otherwise all looked well, there were no signals that anything was wrong, says Mats at the same time as he scoops up two-year-old Julius, the family’s latest addition.

So, one early summer day in June the brothers Hylander were born. Arion fit and hungry while Matteus was slow, sleepy, had a reduced appetite and impaired reflexes. Something was not exactly as it should be. Matteus was weak at sucking and could not be breastfed and had to be fed by tube. Almost immediately the family Hylander got to meet Mary Hägg the department manager at the speech and swallowing centre (ENT), in Hudiksvall and specialised in oral facial medicine: that is to say everything that has to do with the mouth and its associated functions.

Mary established that Matteus had reduced muscle function in the orofacial area. The roof of his palate was high and narrow which contributed to Matteus’ not being able to suck normally and thereby not having the right preconditions to be able to breastfeed.

- The situation felt grave. I swung between hope and doubt, mostly doubt. My hope was not great, but neither has it ever left me completely, rather it has grown in some way. Things can grow better, training can give an effect and I believe also that it can be a work of God, says Mats in a hushed tone as Matteus himself sits quietly alongside and listens.

You can see that it’s not easy for Mats to look back at those past times, at the times that sent him and his wife on a rollercoaster of feelings. Feelings like happiness and sorrow mixed in one huge whirlwind. Joy to have been enriched with two children, but sorrow that one of them perhaps would not have the same future ahead of him as his brother. More than this, they had the twins’ big sister Mindra, three years old to think of. It’s not too much to say that the family found itself in an isolated bubble.

It took two months before Mats and Annette got the verdict that Matteus had Prader Willis syndrome, a syndrome that neither of them had heard of.  They learned that it is caused by a chromosome aberration that can bring about a number of different handicaps, for example development disorders, variable appetite, reduced production of sex hormones and muscle slackness.

- It was a blow to get that verdict, says Mats and looks at his son who sits close by him. You can see that they both have something special together, an invisible band. You can see it in their looks, in the way they look at and communicate with each other.

The diagnosis that Matteus had PWS caused the parents to read everything they could find on the syndrome. They continued to meet Mary Hägg at the speech and swallowing centre, at Hudiksvall hospital.

- She inspired us with all her knowledge and explained that via the mouth one can reach and stimulate a number of muscle functions. Instead of seeing obstacles she saw possibilities. That gave us strength.

After a few weeks’ intensive sucking stimulation - with the aim of strengthening Matteus’ musculature in the tongue, throat, and lips - the tube could be taken away, and Matteus fed from a bottle

- That felt really good. There aren’t many children with PWS that manage that, if I’ve understood it properly.

Matteus orofacial development has continued to go forwards. With continued contact with the speech and swallowing centre and training with a palate stimulator and the neuromuscular exerciser IQoro®, the roof of his palate, which was earlier high and narrow, is normal today. His overbite has reduced, and his ability to close his mouth has improved, his speech ability develops continually as well.

- On the whole Matteus talks well. He has recently learned the “R” sound. Other sounds are still difficult too, but we shall keep training!

Mats Hylander believes that the training has had a positive effect on Matteus’ development regarding his mouth and face and maybe even for other functions. Despite his functional handicaps, Matteus is on his way to a bright future. He doesn’t display the classical symptoms that are often associated with TWS like variable appetite, curved back and overweight. Once a year, the family travels to Stockholm to meet Rickard Nergård, a doctor who is specialist in children with PWS.

- We appreciate him very much. And then, that Mary works in our town is for us a great privilege. Otherwise I would be prepared to travel far to meet her. Her research is impressive and she is an enormous source of inspiration.

Matteus himself seems to take our visit calmly. A cool guy who doesn’t make much fuss. During our meeting he has sat silently and looked at us, but just before we go he breaks into a smile and says

that he likes both school and music. Perhaps a future Cantor-in-waiting like mother Annette and father Mats Hylander.

Copyright: MYoroface AB®

 


Lilla Ellen

Ellen was given the best possible conditions, given her circumstances

Little Ellen was born barely 2 years after her sister Iris left this life to be her guardian angel. The joy of being blessed with another daughter so soon after Iris’ death, was mixed when Ellen was born with Down syndrome. There were many questions to be answered, but thanks to an early intervention to stimulate her sucking, she got the best possible start in life.

Today Ellen is nearly three. An unafraid, strong-willed little girl who spreads happiness around her

Her father Jörgen was not frightened by the syndrome itself, but it became clear that his grieving over Iris was not worked through, he still was living in a bubble of stormy emotions.

At first the mother, Linn, was shocked.

–   I had several examinations during the pregnancy, in the light of what had happened with Iris, and everything looked good, so it was unexpected.

Lynn quickly snapped into solution-seeking mode, and made a firm decision to breastfeed Ellen. The couple had already heard that children with Down syndrome could seldom be encouraged to breastfeed because of weakened sucking reflex, swallowing difficulties and problems with stomach function.

Indeed, Ellen suffered from these problems too, but Linn decided to be strong and the couple made contact with Mary Hägg, a doctor of medicine and dentist specialising in orofacial medicine and the head of the Speech and Swallowing Centre at the ENT department at Hudiksvall hospital.

– Without her knowledge, Ellen would never be where she is today. Mary taught us a method for sucking- and swallowing-stimulation and a face massage technique, that made it easier for Ellen to take the breast.

Four months later, her nasal feeding tube was removed, and their daughter could rely solely on breastfeeding.

– It was a wonderful feeling to watch when it succeeded, says Jörgen and lifts up their newest addition Mirjam, nine months old.

Last summer, Ellen took her first steps which was so important for a little girl whose curiosity is so strong.

Contact with Mary Hägg has continued as their daughter has grown.

–  We have just begun to try the IQoro neuromuscular training device that Mary has invented.

IQoro® stimulates the brain and strengthens the whole muscle chain from the mouth down to the stomach and has a positive effect on speech too. The daughter has already begun to try words like Daddy, Mummy, no and not in combination with sign language. The method will also make it easier for Ellen to be able to begin drinking. Up until now, she has only been able to drink liquids with thickening agents.

There are different tongue movement patterns involved in breastfeeding, compared with when you drink liquid out of glass. With IQoro® Ellen can develop a more adult tongue movement pattern, which will help her to drink safely and effectively.

–  We believe strongly in this. Every Swedish Regional Health Authority ought to have access to this knowledge and this treatment method. It should be everybody’s right, as much for children as for adults, say Ellen’s parents.

 

    

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